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    You are here : Home » About MS » The Geography Of Multiple Sclerosis

    The Geography Of Multiple Sclerosis

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    World Distribution Of Multiple Sclerosis

    Above is a map giving the geographical prevalence of Multiple Sclerosis (MS) world-wide. It has long been established that MS is more likely to occur in communities in the further Northern and Southern Lattitudes, possibly due to less sunlight, environmental factors or dietary reasons.

    We report below on news stories and scientific articles from around the world which look into this apparent "geographical phenomenon".

    Multiple Sclerosis: World's highest rate in Orkney Islands

    MS MRIScotland's Orkney Islands have the highest rate of multiple sclerosis (MS) in the world, according to a major new study.

    Researchers said that the rate for probable or definite MS was now 402 per 100,000 people, up from a previous 309 per 100,000 which was recorded in 1974.

    Teams at the universities of Edinburgh and Aberdeen carried out the study.

    They are now trying to work out why the figure in Orkney is so high, but believe genes could play a key role.

    With MS, the protective layer around nerves, known as the myelin sheath, becomes damaged.

    Messages from the brain to the rest of the body are disrupted, resulting in difficulty moving, muscle weakness and blurred vision.

    There are many suspected risk factors, and the disease is known to be more common away from the equator.

    MS affects about 100,000 people in the UK.

    The new study found that one in 170 Orcadian women suffer from the condition.

    The current figure for Orkney compares to 295 per 100,000 in Shetland and 229 per 100,000 in Aberdeen.

    'So high'

    Dr Jim Wilson, of the University of Edinburgh's Centre for Population Health Sciences, said: "Our study shows that Orkney has the highest prevalence rate of MS recorded worldwide.

    "These findings may reflect improved diagnostic methods, improved survival or rising incidence.

    "We are trying to work out why it is so high, but it is at least partly to do with genes."

    It has previously been noted that areas of high MS prevalence around the world have been settled in by Scottish immigrants.

    Previous studies have shown high rates of MS in Canada and Scandinavia.

    The new study is published in the Journal of Neurology, Neurosurgery and Psychiatry.

    Source: BBC News © British Broadcasting Corporation 2012 (10/12/12)

    Genetic and infectious profiles of Japanese Multiple Sclerosis patients

    Genetics and MSAbstract

    Background
    Nationwide surveys conducted in Japan over the past thirty years have revealed a four-fold increase in the estimated number of multiple sclerosis (MS) patients, a decrease in the age at onset, and successive increases in patients with conventional MS, which shows an involvement of multiple sites in the central nervous system, including the cerebrum and cerebellum. We aimed to clarify whether genetic and infectious backgrounds correlate to distinct disease phenotypes of MS in Japanese patients.

    Methodology/Principal Findings
    We analyzed HLA-DRB1 and -DPB1 alleles, and IgG antibodies specific for Helicobacter pylori, Chlamydia pneumoniae, varicella zoster virus, and Epstein-Barr virus nuclear antigen (EBNA) in 145 MS patients and 367 healthy controls (HCs). Frequencies of DRB1*0405 and DPB1*0301 were significantly higher, and DRB1*0901 and DPB1*0401 significantly lower, in MS patients as compared with HCs. MS patients with DRB1*0405 had a significantly earlier age of onset and lower Progression Index than patients without this allele. The proportion and absolute number of patients with DRB1*0405 successively increased with advancing year of birth. In MS patients without DRB1*0405, the frequency of the DRB1*1501 allele was significantly higher, while the DRB1*0901 allele was significantly lower, compared with HCs. Furthermore, DRB1*0405-negative MS patients were significantly more likely to be positive for EBNA antibodies compared with HCs.

    Conclusions
    Our study suggests that MS patients harboring DRB1*0405, a genetic risk factor for MS in the Japanese population, have a younger age at onset and a relatively benign disease course, while DRB1*0405-negative MS patients have features similar to Western-type MS in terms of association with Epstein-Barr virus infection and DRB1*1501. The recent increase of MS in young Japanese people may be caused, in part, by an increase in DRB1*0405-positive MS patients.

    Satoshi Yoshimura, Noriko Isobe, Tomomi Yonekawa, Takuya Matsushita, Katsuhisa Masaki, Shinya Sato, Yuji Kawano, Ken Yamamoto, Jun-ichi Kira, the South Japan Multiple Sclerosis Genetics Consortium

    Full Article

    Source: PLOS.org (14/11/2012)

    Sun exposure, age related in MS risk

    Sun and MSThe relationship of multiple sclerosis risk to patterns of sun exposure is more complicated than earlier research has indicated, a study in Norway and Italy found.

    In both countries, individuals with little sun exposure during childhood and adolescence were at increased risk for developing MS later in life, according to Kjetil Bjørnevik of the University of Bergen in Norway. That's in line with previous studies around the world.

    But examination of sun exposure at certain ages during winter versus summer showed that the relationship to subsequent MS differed substantially between the two countries, and in ways that did not appear to reflect merely the difference in latitude, Bjørnevik said in a platform presentation at annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis.

    Cultural factors, sunscreen use, and genetics most likely played roles in shaping participants' risk for MS, he suggested.

    Bjørnevik reported an analysis of data from an ongoing five-country study called EnvIMS, in which some 5,700 individuals including 1,980 with MS have completed detailed questionnaires on previous sun exposure, infections, diet, and smoking history.

    At this point, some 85% of the participants have been from Norway and Italy, and the current analysis focused on them.

    Previous studies had suggested that MS risk increases in individuals growing up in extreme latitudes where sun exposure is presumably lower than nearer the equator -- both because of clothing worn in cold climates and because the amount of ultraviolet radiation reaching the ground is weaker with increasing latitude.

    The mechanism by which sun exposure would influence MS risk is believed to involve vitamin D -- sunlight and UV radiation in particular drives endogenous vitamin D production, which in turn appears to correlate with risk of MS and a number of other diseases.

    The EnvIMS questionnaire asked participants to rate their sun exposure for different age ranges -- up to 6, 7 to 12, 13 to 15, 16 to 18, 19 to 24, and 25 to 30 -- separately for summer and winter. Participants were encouraged to ask their parents about their habits in early childhood.

    Surprisingly, the Norwegian participants reported substantially more sun exposure during early childhood than did their Italian counterparts -- during winter as well as summer.

    Almost none of the Norwegians reported little or no sun exposure either in winter or summer before age 13.

    Nearly 40% of Italians, on the other hand, said they received little or no sun exposure in winter when they were 6 or younger, and about 20% answered similarly for ages 7 to 12.

    The disparity between countries was smaller in summer but still apparent, Bjørnevik reported.

    When he and his colleagues analyzed these age-based patterns of earlier sun exposure in MS patients versus controls, they found that the associations differed between the two countries.

    Among Norwegians, the only significant increase in MS risk came with little summertime sun exposure during the teen years (OR 1.6 to 1.8, P<0.05, after adjusting for gender, compared with participants reporting that they spent substantial time outdoors).

    In Italy, however, the significant (P<0.05) MS risks were associated with little sun exposure in summer at age 6 and younger and at ages 25 to 30 (OR 1.5 to 1.6), and in winter only at ages 7 to 12 (OR 1.5).

    Age-specific sun exposure in winter was not a factor in subsequent MS risk in Norway.

    The questionnaire also asked about past sunscreen use during the same age ranges. As Bjørnevik explained, earlier research has indicated that, when sunscreens are applied as recommended, they block enough UV radiation to essentially abolish endogenous vitamin D production.

    In Norway, he reported, "high" use of sunscreen in childhood prior to age 13, but not after, was significantly associated with increased MS risk at odds ratios of 1.4 to 1.5 (P<0.05) after adjusting for age, sun exposure, and physical activity. Self-reported high use at ages 25 to 30, in fact, was associated with a 20% decrease in risk that just missed statistical significance.

    Bjørnevik did not report corresponding data for Italy.

    Session co-moderator George Ebers, MD, of the University of Oxford in England, commented that the findings of this study, as well as others linking decreased sun and UV exposure to MS risk, have implications for public health.

    He noted that many countries have instituted policies to discourage sun exposure, especially in children and teens, because of the risk of skin cancer.

    Yet this relationship, too, is more complicated than is usually portrayed, Ebers said. He cited research showing that people with outdoor jobs, such as utility workers, have a lower incidence of skin cancers than the general population.

    In the zeal to prevent skin cancer, he suggested, other health risks that may stem from insufficient sun exposure have been neglected.

    "Policies of many countries ... may have unexpected biological effects," Ebers said.

    The study was funded by the Western Norway Regional Health Authority and multiple sclerosis associations in Italy, Norway, and Canada.

    Study authors and Ebers reported no relevant financial interests.

    Primary source: European Committee for Treatment and Research in Multiple Sclerosis
    Source reference:
    Bjørnevik K, et al "An age at exposure effect in the association between sun exposure and the risk of MS in Norway and Italy. The EnvIMS study" ECTRIMS 2012.

    Source: MedPage Today © 2012 MedPage Today, LLC. (12/10/12

    New MS initiative launched in UAE

    UAE Flag With the number of patients affected by Multiple Sclerosis (MS) in the UAE rising every year, a group of doctors have come together to raise awareness on the disease by associating with a support group — the Middle East MS Platform — under the aegis of the Ministry of Social Affairs.

    The MS support group comprises doctors and volunteers from various fields who have come together with the aim of promoting awareness and providing clinical, psychological, and moral support for MS patients and their families in the UAE and beyond.

    For as many as 1,000 people reported to be MS sufferers in the UAE, the group will help garner support and understanding from the public and other medical professionals in combating the spread of disease in the UAE, said Dr Nizar Ibrahim, specialist neurologist at Tawam Hospital in Al Ain, and a fellow supporter of the MS platform.

    “The group will help patients have access to the best possible care to assist them in their quest for a normal life,” he said.

    The chronic disease affects the central nervous system and causes symptoms such as changes in sensation, visual problems, severe fatigue, cognitive impairment, difficulties with co-ordination and balance, high body temperature and pain.

    “Symptoms of MS start showing between the age of 10 and 59, but it mainly affects those around 29 and 33 years old. Its symptoms are very evident in the central nervous system that comprises the cerebellum, spinal cord, and the optic nerve,” pointed out Dr Ibrahim.

    “Some of these nerve cells are surrounded and protected by a thick layer that helps the cells transfer signals. MS causes a gradual damage to this layer in all parts of the brain and spinal cord,” he said.

    According to him, there is currently no known cause, but research suggests common environmental and genetic factors that lead to it, noting that it was discovered in 1870 but its treatment only began in 1990.

    The environmental factors are some types of bacteria or viruses that lead to destroying the insulating myelin in both humans and animals. Many viruses are thought to cause this disease. Other researches indicate that the lack of vitamin D might be one of its causes.

    “The disease is probably caused by an immune disorder during which it attacks human cells. MS destroys the myelin that sheathes nerve fibres, causing an interruption in communication between nerve cells of the central nervous system and leading to the emergence of MS.”

    Dr Ibrahim said MS treatment methods have recently improved, starting with injections and pills. He also asserted that the most important factor relates to the patient’s ability in choosing the appropriate specialist physician, so diagnosis is done accurately in order to avoid wrong treatment.”

    “Early treatment may delay disability, especially caused by MS, when compared to delayed treatment. Some injections help in controlling the disease by decreasing the number of attacks and their severity, and eventually delaying disability. These treatments are called disease-modifying treatments as they decrease the number of days the patient spends under the effect of symptoms,” he elaborated.

    Figures indicate that 25 to 50 people out of every 100,000, are prone to develop ME in Arab countries and around 100 in every 100,000 in northern Europe. MS affects females more than males by a ratio of four to one in the 20-40 age group. There are 2.5 to five million people around the world affected by MS.

    Source: Gulftoday.ae Copyright © 2012 The Gulf Today (02/07/12)

    AIIMS to help set up multiple sclerosis database

    Indian FlagThe All India Medical Institute of Sciences (AIIMS) will help set up a national registry for multiple sclerosis (MS), a rare autoimmune disease, doctors from the premier health institute have announced.

    "The neurology centre at AIIMS has today is seeing more MS patients residing in tier I and tier II cities from across the country. Therefore efforts are being made to collate the data and understand the disease from an Indian perspective, which as of now, is not the case as the disease is considered more predominant in the western countries," said Rohit Bhatia, an additional professor of neurology at AIIMS.

    "In this regard, the AIIMS is keen to set up of a National MS Registry for maintenance of epidemiological data of MS patients from across the country for evidence based research, treatment, and education," he added.

    Since 2011, the department of neurology at AIIMS began collecting data of MS patients undergoing counselling and treatment at the institute to track their demographic profile, medical condition, quality of life, disability stage and post treatment outcome.

    Relatively rare in the country, multiple sclerosis is an autoimmune disease affecting brain and spinal cord. With the body attacking its own cells and tissues, common symptoms include numbness, weakness in the limbs, sudden loss of balance, blurred vision and paralysis. MS affects youth in the age of 20-40 years.

    "A three year national programme 'reaching out' pilot project has been initiated since February across cities in Uttar Pradesh to gather more data on MS patients. The final structured project will be implemented in all other states of India in the coming years," said Bipasha Gupta, national secretary, Multiple Sclerosis Society of India.

    Source: NYDailyNews.com © Copyright 2012 NYDailyNews.com (01/06/12)

    Increased demand for MS services ‘reflect difficult times’

    MS DiagnosisNew figures from MS Ireland show increased demand for the organisation’s services in the first quarter of this year.

    MS Ireland is calling on the government to improve access to treatments for people with MS such as Tysabri and Gilenya. The organisation says that the drugs are “widely available” to MS sufferers in other EU countries and are used to treat relapsing-remitting MS.

    Tarragh Donohoe of MS Ireland told TheJournal.ie that both drugs are considered ‘second-line’ treatment and that if people with MS are not taking those, then it’s likely they’re not getting any treatment at all.

    Tysabri is currently available on hospital budgets, but most don’t stretch to actually cover it,” Donohoe said. Meanwhile, Gilenya has been on the HSE reimbursement list “for months” but has not yet been approved for the scheme.

    Donohoe said that MS Ireland believes “people should have as much choice as possible when it comes to their treatment”, but that people with MS should talk to their neurologist before starting any new treatment as the drugs have side effects.

    Support
    According to its report for the first quarter of 2012, the organisation provided a home visit service to 1,757 people with MS around Ireland (up from 1,524 in Q1 2011).

    Over the first three months of this year, 89 people who were recently diagnosed with MS requested a home visit from MS Ireland – up from 72 for the same period of last year. The organisation also provided 234 individual physiotherapy and exercise classes, and 63 counselling and personal development sessions.

    MSI’s chief executive Ava Battles says that the increased demand for services “reflects the difficult times people with MS face”.
    “In addition to the nationwide impact of reduced income and cuts, people with MS also have to cope with the added expenses of living with a disability, reduced care packages, cuts in housing grants and denial of vital services, benefits and treatments.”

    Battles also appealed to the public to help the organisation fundraise for the continued provision of services: “The extra demand on services means we need to fight harder for appropriate funding from the government and work harder to fundraise.”

    Source: The Journal.ie © Journal Media Ltd. 2012 (31/05/12)

    Living with MS - Sri Lanka

    Dr WeerakoonWhile awareness raising has raised the veil on Multiple Sclerosis (MS) in some countries, in Sri Lanka it is still one of the least understood and hidden diseases. “People with MS in our country not only face immense hardships due to their physical disabilities, they have to overcome social stigma that surrounds this disease which in my opinion is their greatest obstacle in integrating with normal society,” says Dr Hithaishi Weerakoon, President of the Multiple Sclerosis Association of Sri Lanka (MSAL).

    Dr Weerakoon should know what she’s talking about. She herself has been a victim of this debilitating neurological disease for nearly two decades. Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord or the central nervous system. It occurs when the immune system mistakenly attacks and destroys healthy body tissue.

    As Dr Weerakoon points out, much of this prejudice stems from the fact that there is still so much ignorance of the disease. “It is one of the least understood and most hidden diseases in our country,” she says. “People who show symptoms don’t like to acknowledge them until it is too late”.

    Her own case is a classic example of this fact. “Even though I am a medical doctor and developed some symptoms such as numbness of the feet when I was still in my twenties, I put it down to psychosomatic symptoms,” she confessed. It was only after her car, after suddenly losing control, crashed onto the car of another lady doctor that she decided to get herself examined.

    “After a thorough examination I was told that I had Multiple Sclerosis.” She was 34 years old when she discovered the terrible truth that she was suffering from a disease for which there was still no cure and would last a life time. But that did not deter this attractive young doctor from moving on and turning her disability into something positive. “I knew that there were many people like me out there. I wanted to reach out and be there for them and help them in whatever way I could,” she said.

    After meeting some of these patients and finding out that the majority of them were from needy families, being home bound living isolated lives, without the means to buy the life-saving drugs, she founded the Multiple Sclerosis Association of Lanka (MSAL), the first of its kind in Sri Lanka, in 2006.

    “We are affiliated to the Multiple Sclerosis International Federation based in the UK and are funded solely by donations and fund raising activities. We meet every other month in Colombo and also in Kandy where we organize talks and discussions with neurologists, physiotherapists and other service providers to help patients cope with MS symptoms.”

    They also encourage people to talk about their individual problems and share their feelings and experiences with others. “Listening to others who share similar feelings and experiences goes a along way in relieving their stress and minimizing their feelings of isolation,” explained Dr Weerakoon.

    She says that after much discussion with the Health Ministry, the Association has recently been promised free drugs for ten selected needy patients. “But they need other services such as physiotherapists to help them when their muscles become rigid and spastic.” She explained that their families also need help. “For example exercise books, pencils, school clothes for the children attending school when the breadwinner or in rare cases when both breadwinners have the disease.”

    On the causes of the disease, she says emphatically, “MS is not genetic or hereditary or is due to something in the environment or the diet.” Scientists, in fact are still trying to find the cause. She said that although the number of cases are still low (84 as far as we know – 20 in Kandy and 64 in Colombo) there maybe many more as they are still unaware of the situation in the North, East and even down South. “We need accurate figures,” emphasized Dr Weerakoon. As she is unable to travel long distances and the Association does not have adequate staff or a proper office yet, this has proven quite difficult.

    The Nation also spoke to Consultant Neurologist Dr Arjuna Fernando to find out more on the disease. “The exact cause is not yet known. It is a non hereditary disease with occasional clustering in some large families. The symptoms involve some common presentations. They include: loss of vision in one eye, numbness or weakness of an arm or leg or both, loss of balance, speech difficulties, weakness of both lower limbs and difficulties in eye movement.

    Do these symptoms occur at the same time? Are they similar to a stroke? “No,” says Dr Fernando. “They usually occur one at a time. Whereas a stroke occurs and is completed in a flash, in the case of MS it occurs over a couple of days and progresses gradually. For example loss of vision doesn’t happen in a second, as in the case of a stroke.” Symptoms progression takes place over hours and days not minutes, he explained. Moreover symptoms also vary.

    On diagnosis of the disease he says, “It employs a combination of procedures. We look at the presentations and symptoms and then conduct an MRI scan and a spinal fluid analysis using the lumber puncture procedure. We also do a test called Visually Evoked Potential.”

    What about treatment? “Basically there are three segments of treatment: 1) Acute treatment 2) Prevention of further recurrence 3) management of complications – as in the case of loss of bladder control in the advanced stage. The Acute Treatment stage usually lasts for about two weeks where the patients are administered IV (intravenous) drugs for three weeks and oral steroids. However, the most important stage of treatment is the one that prevents further recurrences of the disease and the management of effects of MS.”

    When asked what the Health Ministry needed for patients with MS, he said, “What we need is the entire health support system to help these patients by way of rehabilitation support.” He explained that, since most of these patients are homebound, they are in immediate need of a support system that will give them physiotherapy at home so they need not come to the hospital. “These home based services, which are mandatory according to the Disability act, are still not available for these patients,” said Dr Fernando. While stroke patients are given priority for receiving such services since there are so many of them, it is time that the Health Ministry also starts looking at the needs of patients with multiple sclerosis.

    MS

    Source: The Nation Copyright © 2011 Rivira Media Corporation Ltd (28/05/12)

    Rising incidence of MS in females associated with urbanisation

    MS MRISummary: This epidemiological study from the island of Crete reports a significant rise in the incidence of MS over the past three decades.

    The findings suggest a particular rise in incidence in young women with a rise in female:male ratio from 0.9 in 1980 to 2.1 in 2008, with females living in towns or having relocated at a young age from the countryside to urban centres being most affected. Other environmental factors that were more prevalent in those with MS than controls include, smoking, alcohol consumption, oral contraception use, use of vitamin supplements and older age at first child birth.

    Abstract
    OBJECTIVE:
    To design and perform a case-control study of multiple sclerosis (MS) in Crete, an island of 0.6 million people, that has experienced profound socioeconomic changes in recent decades.

    METHODS:
    All MS cases occurring on Crete from 1980 to 2008 were ascertained. To search for putative risk factors, a structured questionnaire of 71 variables was employed, with patients with MS (n = 657) being compared to random controls (n = 593) matched for age, gender, and current place of residence.

    RESULTS:
    MS incidence rose markedly on Crete over the past 3 decades. This increase was associated with a major shift in MS distribution among genders (1980: F/M = 0.9; 2008: F/M = 2.1), with females living in towns or having relocated at a young age from the countryside to urban centers being mainly affected. In rural Crete, MS showed lesser increases and gender preference. Of the major changes that accompanied urbanisation, smoking among women with MS increased dramatically, while imported pasteurized cow milk virtually replaced fresh goat milk produced locally. Compared to controls, female patients with MS more often used contraceptives and were older at first childbirth. Besides smoking, alcohol drinking and vitamin intake was more common among female patients with MS. Also, the distribution of childhood diseases and chronic medical conditions differed significantly between patients with MS and controls.

    CONCLUSIONS:
    MS incidence rose markedly over 3 decades in a genetically stable population in tandem with a transition from rural to urban living, thus possibly implicating environmental factors introduced by urbanisation.

    Authors: Kotzamani D, Panou T, Mastorodemos V, Tzagournissakis M, Nikolakaki H, Spanaki C, Plaitakis A.

    Source: Neurology. 2012 May 16. [Epub ahead of print] & Pubmed PMID: 22592376 (23/05/12)

    A new prevalence study of MS in Orkney, Shetland and Aberdeen city

    Scottish FlagSummary: A new epidemiological study from the UK, examining prevalence of MS in northern Scotland, shows a rise in prevalence of the disease over the past 30 years.

    The highest increases have been in Orkney, which now has the highest recorded rate worldwide at 402 (95% CI 319 to 500) per 100 000 using the Poser criteria (probable/definite). A rise in prevalence was also seen in Aberdeen and the Shetlands, with lowest levels in the most deprived socio-economic group and highest in women (2.55:1) which the authors believe is best explained by “gene-environment interaction”.

    Abstract
    Background 30 years ago very high multiple sclerosis (MS) prevalence rates were recorded in northern Scotland. A prevalence study was repeated in Aberdeen, Orkney and Shetland to see if prevalence rates had changed, assess which factors affect prevalence and record disability status.

    Methods Hospital, general practice and laboratory records were searched to identify prevalent MS patients (alive and registered with a participating general practice on 24 September 2009). Records were reviewed to confirm diagnoses applying Poser definite and probable and McDonald diagnostic criteria. Disability status (Expanded Disability Status Scale) was recorded from records and questionnaires. Rates were standardised to the Scottish population.

    Results 590 patients were found (Aberdeen 442, Orkney 82, Shetland 66). Mean age and disease duration were 53 and 19.4 years, respectively. The standardised prevalence rates for Poser probable/definite MS per 100 000 were: combined area 248 (95% CI 229 to 269), Orkney 402 (95% CI 319 to 500), Shetland 295 (95% CI 229 to 375) and Aberdeen 229 (95% CI 208 to 250). McDonald diagnostic criteria gave a lower prevalence (202, 95% CI 198 to 206). Prevalence was highest in women (2.55:1, 95% CI 2.26 to 2.89) with about 1 in 170 women in Orkney affected. Prevalence was lowest in the most deprived socioeconomic group. 45% had significant disability (Expanded Disability Status Scale ≥6).

    Conclusion The prevalence of MS has increased in the overall area, most markedly in Orkney, then Shetland, over the past 30 years. This increase could be due to a number of factors, but rising incidence as reflected by a rising sex ratio, influenced by gene-environment interaction, is the most likely. Orkney has the highest prevalence rate recorded worldwide.

    Authors: Visser EM, Wilde K, Wilson JF, Yong KK, Counsell CE.

    Source: J Neurol Neurosurg Psychiatry. 2012 May 10 & Pubmed PMID: 22577232 (16/05/12)

    Kuwait societies aim to raise MS awareness

    Kuwait FlagTwo major medical and cultural societies in Kuwait have joined hands with local experts to raise awareness of the neurological disorder Multiple Sclerosis (MS) through a series of educational talks.

    “Most of the MS information on the Internet is available only in English, which makes it difficult in predominantly Arabic-speaking populations like Kuwait to keep the patients and public informed,” said Dr Raed Al Roughani, senior neurology specialist in Al Amiri Hospital, Kuwait City, at one of the talks organised by the Kuwait Multiple Sclerosis Association (KMSA) and Kuwait Women Cultural and Social Society (KWCSS).

    “We are finding more and more that they use blogs and forums with non-approved medical information as the basis for their choices.”

    “Also we’re finding that many people are afraid of being diagnosed with an illness, so while they know that they are exhibiting symptoms that are unusual, they will not go seek a diagnosis out of fear. This is why these talks are so very important,” Dr Al Roughani added.

    “The first educational forum hosted on April 15 with MS patients and their families was a great success. Dr Al Roughani answered questions from patients and their families about the best and latest treatments for MS as well as explaining the importance of psychological care for patients to improve their quality of life – information they all quite desperately needed,” said Mona Al Musaireei, chairperson of the KMSA.

    The second educational forum that took place yesterday (May 2) evening focused on the critical importance of MS awareness of patients and primary health care providers, to help diagnose the disease, said Al Musaireei.

    “There are up to 1,400 patients in Kuwait with MS and our recent results have shown that about 40 per cent are not fully adherent with their current medication regimen. This is a result of the undesirable side effects of some drugs and also a perceived lack of efficacy – the patients believe that the drug has no effect,” said Dr Al Roughani.

    Kuwait’s Ministry of Health licensed the world’s first oral medication for the relapsing remitting form of MS last year, which affects around two-thirds of those diagnosed with the disease. Local doctors said that this new treatment option would help improve the quality of life and medication for patients in the country.

    Existing treatment includes the need for patients to undergo regular injections, which can cause flu-like symptoms for 24 hours and leave red marks on the skin. The new oral treatment would remove the need for these regular injections.

    Research figures show MS affects around 25 to 50 people in every 100,000 in Arabic populations and about 100 per 100,000 in Northern Europeans who display the highest risk of MS across the world, with prevalence seeming to increase with further distance from the equator.

    MS is a nervous system disease with no known cause that affects the brain and spinal cord, leading to symptoms such as visual disturbances, muscle weakness, trouble with coordination and balance, sensations such as numbness, prickling or "pins and needles" and thinking and memory problems.

    Globally MS affects women more than men and often begins between the ages of 20 and 40. The disease can be mild but some people lose the ability to write, speak or walk. There is no cure for MS but medicines can slow disease progression and help control symptoms.

    Source: TradeArabia News Service Copyright (c) 2012, Al Hilal Publishing & Marketing Group (03/05/12)

    Dubai to host region’s first MS patient forum

    UAE FlagThe Middle East’s first-ever multiple sclerosis (MS) patient forum will take place this weekend in Dubai, officials said at the launch of an MS awareness bus tour yesterday (March 27) at Rashid Hospital.

    The MS awareness bus tour’s first stop was Sheikh Khalifa Medical City (SKMC) in Abu Dhabi, where MS task force members and doctors met with patients, families and the public to highlight the plight of MS sufferers across the country.

    “We’re pleased to be collaborating with hospitals in the UAE to raise awareness around MS, and an awareness tour across the Emirates from Dubai, to Abu Dhabi, to Al Ain and Sharjah allows us as healthcare professionals to collaborate and share knowledge with each other and with patients, to ensure all UAE residents continue to be at the forefront of treatment and support options,” said Dr Suzan Nouri, consultant neurologist at Rashid Hospital, and a member of Emirates Neurology Society (EMINS).

    “The patient forum on March 30 will be the first-ever gathering of MS patients from all of the participating hospitals, joining together to discuss their treatment and quality of life with others, and especially with health care professionals,” she added.

    Following the first stop at SKMC the tour continues to Tawam Hospital, Al Ain Hospital, Kuwaiti Hospital and Qassimi Hospital over March 28 and 29.

    The tour will conclude with an MS healthcare professional forum, following the first-ever patient forum on March 30 at Shangri-La Hotel in Dubai, from 10am to 3pm.

    “This type of cross-institutional cooperation is how we will be able to really drive increased awareness for MS in the country, not just from the public but also across medical institutions and professionals. It really is a shared responsibility for all in the medical community to facilitate MS patients leading normal, healthy and happy lives,” said Dr Taoufik Al Saadi, senior consultant and head of Neurology, SKMC.

    Dr Ali Shakar, president of the Emirates Medical Association said: “Healthcare in the UAE is excellent, and that is a position which we in the professional medical community intend to maintain long into the future. Promoting improved disease awareness is a critical step toward ensuring that all UAE residents continue to receive truly world-class medical care.”

    MS is a nervous system disease with no known cause that affects the brain and spinal cord. MS damages the myelin sheath that surrounds and protects the nerve cells which slows down or blocks messages between the brain and the body, leading to the symptoms of MS: these include visual disturbances, muscle weakness, trouble with coordination and balance, sensations such as numbness, prickling, or "pins and needles", and thinking and memory problems.

    “MS can occur at any age, but it most often presents in people between the ages of 20 and 40 – some of the most productive years of any person’s life. With access to the right information, suitable treatment, and awareness and understanding from the public, many patients can live normal lives,” said Dr Tayseer Mohamed Zain Elabdin Ali, senior consultant and head of Neurology Department at Al Qassimi Hospital, Sharjah.

    The UAE MS taskforce is composed of neurologists, nurses, patients, rehabilitation specialists, and psychologists, and will embark upon a year-long campaign of tours, speaking events, fundraising, and other awareness activities.

    With as many as 1,000 reported MS sufferers in the UAE, the taskforce and year-long campaign activities are set to help improve the quality of life and medication compliance for many of those affected with the disease.

    Research figures show MS affects around 25 to 50 people in 100,000 in Arabic populations and about 100 per 100,000 in Northern Europeans who display the highest risk of MS across the world, with prevalence seeming to increase with further distance from the equator.

    Source: Trade Arabia Copyright (c) 2012, Al Hilal Publishing & Marketing Group (28/03/12)

    Characteristics of multiple sclerosis in aboriginals living in British Columbia, Canada

    Canada FlagSummary: This novel retrospective, epidemiological, comparison study from British Columbia, Canada, uses existing clinical and genetic data to compare disease characteristics between MS patients of aboriginal origin with those with non-aboriginal origin.

    The authors found no significant differences between the MS aboriginals and the non-matched, much larger, comparator group with respect to age, sex or disease course. However, aboriginals progressed more rapidly to EDSS 6 from disease onset. This interesting paper incorporates the largest aboriginal cohort identified to date and suggests a more rapid rate of progression in these patients.

    Abstract
    Objectives: The objectives of this study were to identify and describe the demographic and clinical characteristics of multiple sclerosis (MS) in aboriginals in British Columbia (BC), Canada and compare these findings with non-aboriginal MS patients.

    Methods: This retrospective chart and database review accessed patient information from the linked BC-wide MS clinical and genetics databases. Data gathered included: demographics (age, sex and ethnicity); clinical characteristics (MS onset date, disease course and disability scores (Expanded Disability Status Scale [EDSS]). Aboriginals were identified via the database linkage augmented by physician and nurse recall. Two non-aboriginal comparator groups with definite MS were selected. Group one included all definite MS patients in the BC MS database, and group two comprised MS patients matched by sex, age at onset and initial disease course. Patient characteristics were compared using the Student's t-test, chi-squared test, and Kaplan-Meier survival analysis was used to examine disease progression (time to sustained and confirmed EDSS 6)

    Results: We identified 26 aboriginals with MS, of which 19/26 (73%) were female, 23/26 (89%) had relapsing-onset MS and a mean onset age of 31.1 years. There were no significant differences between the MS aboriginals and the non-matched (n = 5708) comparator group with respect to age, sex or disease course (p > 0.1), However, aboriginals progressed more rapidly to EDSS 6 from disease onset (p < 0.001) when compared with the matched and unmatched comparator groups.

    Conclusion: We identified a small, but important cohort of aboriginals with MS; being the largest identified to date. There was evidence of more rapid MS progression in aboriginals compared with non-aboriginals.

    Saeedi J, Rieckmann P, Yee I, Tremlett H.

    Source: Mult Scler. 2012 Mar 1 & Pubmed PMID: 22383230 (07/03/12)

    Multiple Sclerosis treatment a challenge in India?

    Indian FlagOne in a lakh Indians is thought to suffer from multiple sclerosis, a life-long disorder of the nervous system. Support groups are lobbying to bring the disease under the Disability Act, and are fighting for insurance cover.

    It was 18 years ago that Mariam Nisreen was struck by multiple sclerosis. She just woke up one day, feeling pain in her eyes, tingling in her feet and parts of her body, as well as numbness in her cheeks. She lost coordination as well, often dropping things she was holding.

    She's been on medication ever since.

    Mariam Nisreen, a patient, says, "Once even if I stop the medicines for one or two days, I get severe symptoms. So I can't stop the injections or the tablets, I have to be very regular in that."

    An auto immune disorder, multiple sclerosis affects people, mostly women, in the age group of 25-55. There's no known cause or cure, though risk factors include genetic transmission, Vitamin D deficiency, smoking and the EB virus.

    While at least one in a lakh Indians is believed to have multiple sclerosis, doctors say even the diagnosis is a challenge in India. Cost of treatment is another hurdle.

    Dr ES Krishnamoorthy, Senior Consultant, Clinical Neurology and Neuropsychiatry, says, "There's another problem with access, which is the cost. Imaging by itself can be very expensive, and not everyone can afford repeated imaging."

    "Then there are some biological tests to do with the spinal fluid, to do with the blood, which once again are very expensive, not available everywhere in the country," he said.

    Support groups like the Multiple Sclerosis Society help patients cope, and are also lobbying with the government for policy changes, to give MS patients access to affordable healthcare and disability benefits.

    Ann Gonsalves, Vice-president, MS Society, says, "Most of the government insurance companies and now even the private health care are not prepared to cover multiple sclerosis because it's a long drawn process and highly costly."

    Even the Disability Act doesn't cover MS directly in India.
    Mariam's family pays Rs 70,000 a month for drugs, to be injected every alternate day.

    Doctors say awareness is the key to early detection. But amendment to include multiple sclerosis in the Disability Act and subsidising treatment costs would help MS patients cope with their lives better.

    Source: IBNLive © 2012 IBNLive.com India (21/02/12)

    Multiple sclerosis on the rise in India

    MS MRIThe occurrence of Multiple Sclerosis, an inflammatory disorder of the human brain and the nerves, is significantly on the rise in India where it is now “largely under-recognised and under-diagnosed”, Dr Richard A Rudick, a renowned neurologist said on Saturday.

    While the disease prevalence rate in the US is around one per 1, 000 population, almost as many people in India “may be affected” by this disease, Dr Rudick, Director of the Mellen Centre for Multiple Sclerosis Treatment and Research, Department of Neurology, Neurological Institute, Cleveland, USA, said here.

    Delivering the prestigious T S Srinivasan Endowment Oration, which brings to India world leaders in the field of neurology every year, he said such a prevalence level “could make its occurrence rate in India exponentially much higher than that of the US.”

    Stating that the disease, which is on the rise all over the world, was a prototype “auto-immune disease” that affects the brain and the spinal cord, he added that its most recognisable symptoms include--visual loss that can last for days or weeks, inflammation of the spinal cord that can manifest as numbness from the legs right up to the hip region, difficulty in walking and loss of balance while doing so.

    No longer untreatable

    However, neurologists across the world in the last 15 years have made dramatic progress in treating the disease than in the last 200 years, Dr Rudick said. “The good news is that it is no longer untreatable.

    “With today’s medical advances, we can completely control the disease in about 30-50 per cent of the patients,” emphasised the neurological expert who has played a key role in several clinical trials and in developing new imaging measures for it.

    Even as there was growing awareness about this disease across the world, he said it affect women more than men, particularly in the age group of 15-50 years.

    People in the northern latitudes who lived farther away from the equator were more prone to get this disease.

    Source: Deccan Herald Copyright 2012, The Printers (Mysore) Private Ltd (13/02/12)

    UAE's Multiple Sclerosis patients to benefit from national taskforce

    UAE Flag The first-ever national taskforce to tackle multiple sclerosis (MS) in the UAE has been created by the Emirates Neurology Society (EMINS), it was announced at a press conference today, in the hopes of improving quality of life for MS sufferers across the country.

    Acting under the umbrella of the Emirates Medical Association(EMA), EMINS today signed a Memorandum of Understanding (MoU) with Swiss pharmaceutical company, Novartis, to commit to a national MS campaign in the country throughout 2012, starting with the first taskforce meeting in Dubai on 27 January.

    "Healthcare in the UAE is excellent, and that is a position which we in the professional medical community intend to maintain long into the future. Promoting improved disease awareness ± in this case, through this newlyformed MS national taskforce ± is a critical step toward ensuring that all UAE residents continue to receive truly world-class medical care," said Dr. Ali Shakar, President of the Emirates Medical Association.

    MS is a nervous system disease with no known cause that affects the brain and spinal cord. MS damages the myelin sheath that surrounds and protects the nerve cells which slows down or blocks messages between the brain and the body, leading to the symptoms of MS: these include visual disturbances, muscle weakness, trouble with coordination and balance, sensations such as numbness, prickling, or "pins and needles", and thinking and memory problems.

    "MS is a debilitating disease that affects patients not just physically but psychologically. Armed with increased awareness and knowledge of the illness and treatment options, there is significant potential for patients to better manage their illness and enjoy a higher quality of life," said Dr. Suzan Nouri of the Emirates Neurology Society.

    "This national taskforce is the first-ever group dedicated to conducting a lengthy national campaign aimed at raising awareness and educating the general public, patients, and the medical community from every perspective," added Dr. Nouri, who is also a member of the UAE MS Society and has several affiliations with neurology and MS societies worldwide, including the American Neurology Society and the International Federation of Multiple Sclerosis.

    The taskforce is composed of neurologists, nurses, patients, rehabilitation specialists, and psychologists, and will embark upon a year-long campaign of tours, speaking events, fundraising, and other awareness activities.

    With as many as 1,000 reported MS sufferers in the UAE, the taskforce is set to help improve the quality of life and medication compliance for many of those affected with the disease.

    Research figures show MS affects around 25 to 50 people in 100,000 in Arabic populations and about 100 per 100,000 in Northern Europeans who display the highest risk of MS across the world, with prevalence seeming to increase with further distance from the equator.

    Globally, MS affects women more than men and often begins between the ages of 20 and 40. The disease can be mild but some people lose the ability to write, speak or walk. There is no cure for MS, but medicines can slow disease progression and help control symptoms.

    "We are committed to combating MS in the UAE, and partnering with EMINS in this first-ever national campaign will help garner support and understanding from the public and other medical professionals, and help patients have access to the best possible care to assist them in leading a normal life," said Walid Kattouha, Head of Middle East Cluster at Novartis.

    Source: MENAFM.com © menafem.com 2012 (30/01/12)

    MSIF concerned over rise in incidence of MS in India

    Indian FlagThe Multiple Sclerosis International Federation (MSIF) calls for urgent action and better treatments to be made available in India to address the ever increasing cases of Multiple Sclerosis (MS) in India.

    With more evidence gathering that genetic susceptibility for MS among Indians may be similar to that for white populations, experts fear different clinical manifestations of multiple sclerosis likely to be present in the Indian population with increase detection rates and awareness in the coming decade.

    Multiple Sclerosis (MS), a nerve disease, whose cause and cure is yet unknown, is slowly gaining ground in India and other Asian countries like China with the same severity like in the west.

    This was disclosed at the concluding knowledge forum of the Multiple Sclerosis International Federation (MSIF) summit where leading Multiple Sclerosis (MS) specialists from USA, UK and India addressed a gathering of approximately 400 persons that included delegates from 48 countries, special invitees from the government, donors, supporters from corporate houses and the city’s select.

    Experts revealed that although there was no cure for multiple sclerosis, there is a great deal of ongoing research in multiple sclerosis, and there continues to be a focus on the immune system in investigational therapies. There are many drugs that can slow down the progression of the disease. Disease Modifying Drugs – DMDs – are drugs which affect the long-term progression of MS. In addition, scientists are trying to develop techniques that allow brain cells to generate new myelin (nerve layer) or that prevent the death of nerves.

    Other promising approaches include the use of precursor cells that could be implanted into the brain or spinal cord to repopulate areas of missing cells and new methods to improve impulses traveling over the damaged nerves. Scientists also are exploring the effects of diet and other environmental factors on multiple sclerosis.

    More than two lakh people in India are estimated to have multiple sclerosis. Usually, a person is diagnosed with multiple sclerosis between 20 and 50 years of age, but multiple sclerosis has been diagnosed in children and in the elderly. Women are twice as likely as men to be affected by multiple sclerosis earlier in life.

    According to Dr M V Padma, neurologist, AIIMS, “The symptoms of multiple sclerosis can be so mild and so infrequent that the sufferer may never know they have the disease. With detection rates rising we are confident patients of multiple sclerosis can live longer and healthier if they undergo early diagnosis and treatment instead of waiting until the disease has progressed. The advent of newer imaging techniques like MRI has added a new dimension to the diagnostic possibilities and needs to be taken advantage of, as they are a great value in detecting such cases.”

    Doctors still do not understand what causes multiple sclerosis, but there are interesting data that suggest that genetics, a person's environment, and possibly even a virus may play a role.

    Dr B S Singhal, professor and head, Department of neurology, Bombay Hospital, “MS is an auto-immune disease in which the body attacks its own cells and tissues. It occurs as a result of immune damage to the myelin sheath which insulates the central nervous system’s nerve fibers. This damage blocks the passage of nerve impulses from the brain to other parts of the body. The disease primarily attacks youths during the most productive years of their lives. Since the disease has no cure it needs to be managed with exercise and medications that help delay the progression of the disease by controlling its symptoms. If MS is left untreated, patients may eventually develop severe and irreversible disabilities.”

    The Multiple Sclerosis Society of India (MSSI) is a charitable, non-profit voluntary organisation founded in the year 1985. It works with the MSIF for the welfare of persons afflicted with Multiple Sclerosis in India.

    Source: Pharmabiz.com Copyright © 2010 Saffron Media Pvt. Ltd (16/11/11)

    Australian report highlights the economic impact of MS

    Australian FlagA new report into the economic impact of multiple sclerosis reveals the substantial costs associated with the condition, and highlights the need for fundamental reform of disability care and support in Australia.

    The Minister for Families, Housing, Community Services and Indigenous Affairs Jenny Macklin and the Parliamentary Secretary for Disabilities and Carers Senator Jan McLucas launched Multiple Sclerosis Research Australia’s Economic impact of multiple sclerosis in 2010 report in Canberra today.

    “Multiple sclerosis can place serious pressures on families,” Ms Macklin said.

    “This report underscores the significant impact of multiple sclerosis on quality of life, and the substantial economic and social burden it can place on people with the condition, as well as on the community.

    “The report shows that the prevalence of multiple sclerosis has risen steadily over time to the current estimate of more than 21,000 Australians living with the condition.

    “It also shows that the substantial costs associated with multiple sclerosis rise with severity for various reasons, including an increased need for care and for alterations to cars and houses, as well as loss of income.

    “These are just some of the reasons the Australian Government has taken the lead on fundamental reform of disability services to help people with disability fulfil their potential.

    “Last month the Australian Government and all state and territory governments agreed to lay the foundations for a National Disability Insurance Scheme by mid-2013—a year ahead of the timetable set out by the Productivity Commission.

    “The Productivity Commission identifies early intervention to maximise economic and social opportunities for people with disability, their families and carers as a key element of a National Disability Insurance Scheme,” Ms Macklin said.

    Senator McLucas said the Australian Government was also working to improve the lives of people with disability through the National Disability Strategy, which was endorsed by the Council of Australian Governments earlier this year.

    “This strategy provides a 10-year national policy framework to improve the lives of people with disability, promote participation including employment participation, bring about change in mainstream services and community infrastructure, and create a more inclusive society,” Senator McLucas said.

    “The research in today’s report will help governments as we work to identify overcome the obstacles to people with multiple sclerosis and their carers accessing the best possible support and participating as fully as possible in economic and community life.”

    Source: Invest in Australia © Copyright 2009-11 Invest in Australia Hanko Hackberry Group. (04/11/11)

    Major MS study begins in Scotland

    Scots FlagThe first major study into how many people have multiple sclerosis (MS) in the UK is to be launched in Edinburgh in a bid to finally find what causes the condition.

    The project will allow researchers to put a figure on the number of those living with MS, and could help find common factors in patients.

    It is suspected that cases - of which there are thought to be 2000 in the Lothians - are on the rise, particularly among young women, but there are no definitive statistics.

    The study has been welcomed by professionals and charities who are desperate to make progress on what is known about MS, especially given its high prevalence rate north of the Border.

    Edinburgh was chosen to host the pilot because of Scots' vulnerability to MS - experts say it has the highest rate in the world - and the level of expertise both within NHS Lothian and Edinburgh University.

    Despite the exhaustive amount of data collected on other illnesses, there is nothing but anecdotal evidence and limited university studies to reveal the picture of MS.

    Dr Belinda Weller, consultant neurologist at the Western General hospital, will be heavily involved in the study.

    She said: "It is thought rates of MS are going up, but we have never had good information about it. That is what we are trying to work on. We have developed a register and are trying to get the required people on it. It is surprising that the numbers haven't been gathered before now.

    "It could help us find the cause, we think it is probably something in the genetics, or something in the environment. Smoking could be a trigger. We really need to have the numbers because once we do, we can begin to compare the cases."

    A similar project was launched in the Capital last year to record newly-diagnosed patients in Scotland.

    While this helps generate data, a complete view of all sufferers across the UK is the aim.

    David McNiven, director of MS Society Scotland, said: "Registration is simple, but the collective outcome from this register could make a significant contribution to improving services locally and nationally."

    NHS Lothian has upped the number of vitamin D supplements it hands out every year, according to figures obtained by the Evening News through Freedom of Information.

    The health board said that the vitamin helps many conditions.

    • To sign up to the register, visit http://www.ukmsregister.org.

    Source: Edinburgh Evening News ©2011 Johnston Press Digital Publishing (17/06/11)

    Increasing incidence of multiple sclerosis in women in Northern Finland

    MS MRISummary: The authors evaluated the incidence and prevalence of MS in Northern Ostrobothnia by means of a retrospective cohort study covering the period 1992-2007 and found, using the older Poser criteria and McDonald 2001 criteria to define disease, that the incidence showed a tendency to increase over the 16-year period due, primarily, to rising female incidence.

    The authors propose environmental factors such as vitamin D deficiency as possible mechanisms. However the results seem to agree with other reports over the past decade that also suggest a rise in MS incidence, which is observed mainly amongst women, and which may point towards a sex-linked environmental factor playing a role.

    Abstract
    Background: The geographical distribution of multiple sclerosis (MS) means that prevalence rates increase with latitude north or south of the equator. Temporally, a tendency for increased incidences of MS has been observed over the past two decades. Objectives: Since epidemiological studies of MS in areas close to the Arctic Circle are rare, we evaluated the incidence and prevalence of MS in Northern Ostrobothnia by means of a retrospective cohort study covering the period 1992-2007.

    Methods: Patients with a definite clinical diagnosis of MS based on the Poser criteria and the early McDonald criteria of 2001 were identified in the region of Northern Ostrobothnia (population 386,972) and the incidence was calculated at 1-year time intervals, both overall and by gender.

    Results: The overall prevalence was 103/100,000 (95% CI, 93-113), with a female/male ratio of 2.17. The mean overall incidence was 6.3/100,000 (95% CI, 5.2-7.2). The incidence shows a tendency to increase over the 16-year period due to a pronounced rise in the female incidence.

    Conclusions: Our results show a high prevalence of MS in Northern Ostrobothnia and a disproportional increase in the female MS incidence. These recent epidemiological features may be associated with environmental risk factors such as a vitamin D deficit, low life-long UV radiation and the high-latitude geographical location.

    Krökki O, Bloigu R, Reunanen M, Remes A.1

    1Institute of Clinical Medicine, Neurology, University of Oulu, Oulu, Finland.

    Source: Mult Scler. 2011 Feb;17(2):133-8. & PubMed PMID: 20935028 (02/03/11)

    Growing prevalence of MS throughout Arabia to be discussed at Arab Health 2011

    MS MRIThe effects of Multiple Sclerosis (MS) the debilitating neurological disorder that attacks the central nervous system will be in focus during a dedicated one-day conference at the Arab Health Congress 2011, although scant information is available about just how widespread the disease is in the Middle East region.

    MS strikes twice as many women as it does men, generally affecting adults between 20 and 40 years of age, however it is known to affect young children as well. Although no accurate data is available, according to US-based WrongDiagnosis.com, part of the HealthGrades network, MS is estimated to affect in excess of 400,000 people in the US and extrapolating that prevalence across the Middle East suggests the region has over 350,000 sufferers.

    Chairing the conference of the new Multiple Sclerosis Update, which takes place on 27 January 2011, is Dr. Shareefa Abdool, President of the UAE-based Emirates Neurological Society (EMINS) who will give the welcoming address to the conference delegates.

    "MS is a complex disease with a variety of symptoms which can range from impaired vision, loss of balance, to lack of mobility and bladder control. It is imperative that diagnosis is made as early as possible so that a course of treatment can be prescribed which can at least manage the symptoms and offer patients a near normal life," said Dr. Shareefa Abdool.

    Recognising the potential scale of the problem, The Middle East Multiple Sclerosis Patients Platform, an affiliation of independent MS organisations, groups of healthcare professionals and commercial corporations was launched last year in Sheikh Khalifa Medical City in Abu Dhabi aiming to at least enhance the quality of life for MS sufferers.

    During the one-day MS conference experts will discuss and debate the latest in MS research, diagnosis, management and rehabilitation. The event has attracted top international and regional neurologists, physiatrists and physical therapists such as Dr. Alex Rae-Grant, Clinical Associate Professor at Cleveland Clinic, Dr. Sabahat Wasti, Consultant in Physical Medicine and Rehabilitation at Sheikh Khalifa Medical City in Abu Dhabi and Dr. Robert Fox, Staff Neurologist and Medical Director at the renowned Mellen Center at the Cleveland Clinic in the US.

    "MS was once predominant amongst Caucasian women living in colder climates, typically in North America and Europe. However it has become more common in the Middle East and with so little known about the disease and no known cure, that is a concern," said Simon Page, Group Director of Life Sciences at IIR Middle East, the organiser of Arab Health 2011.

    The one-day MS conference is just one of the highlights of the Arab Health Exhibition and Congress which takes place at Dubai International Convention & Exhibition Centre on 24-27 January 2011. Elsewhere on the conference agenda, highlights include 16 seminars ranging from Anaesthesia to Chronic Respiratory Diseases as well as the Leaders In Healthcare conference.

    Source: AME Info.com © 1996 - 2011 AME Info FZ LLC (17/01/11)

    Multiple Sclerosis cases on the rise in ME region

    MS DiagnosisA debilitating disease that causes disability in adulthood, and commonly found only in temperate climate, is raising an alarm among specialists in the region.

    According to Dr Taoufik Al Saadi, chief neurologist at the Shaikh Khalifa Medical City (SKMC), Multiple Sclerosis (MS) is an inflammatory debilitating disease that affects the central nervous system.

    The auto-immune disease impairs myelin — the fatty layer that covers the brain and the spinal cord — affecting the ability of the nerve cells in the brain and spinal cord to communicate with each other, resulting in motor impairment, balance, visual, sensory and cognitive (memory) problems.

    Patients with MS usually complain of visual loss (50 per cent of patients), painful sensation when moving their eyes, tingling, numbness, weakness, coordination problem and difficulty balancing, depending on which area of the brain is affected.

    “The problem is, 50 per cent of the patients would eventually progress to the secondary progressive form. And once patients reached the progressive course, it will only take them a few years, four to five years, before they become disabled.”

    “On an average, it takes about 15 years before patients need to use the cane for walking assistance even for up to 100 metres,” said Dr Al Saadi.

    “MS is actually the leading cause of disability in adulthood,” the neurologist stated, noting that women between the ages of 20 and 40 are twice more likely to be affected than men.

    “MS tends to be more prevalent in temperate climate or those away from the equator, such as Sweden and other Scandinavian countries,” cited Dr Al Saadi. Although there is no accurate data on people with MS in the region, anecdotal evidence showed that “it’s probably quite a prevalent disorder.”

    “We started to see an increasing number of patients every year in our clinics. Other hospitals in the UAE and the Gulf are seeing the same thing. We probably have a few thousands of patients with this disease in the whole region, based on my own observation and those of my colleagues,” said Dr Al Saadi in an interview.

    The youngest patient the specialist currently treats is 15 years old while the oldest is in early 50s.

    Dr Al Saadi did not mention the nationalities of those greatly affected but assured that the cases he has seen “follow the same pattern we’ve seen in Europe and in the US involving visual, brain and the spinal cord.”

    “There’s a very low incidence in the Asian population here, and those with MS follow a different neurological form, involving mostly the spinal cord,” he added.

    According to Dr Al Saadi, there’s a reduction in the life expectancy of seven years on average, of MS patients compared to the general population as a result of the disease and its complications.

    In the Gulf, the sultry weather condition could exacerbate the condition of patient with MS.

    “About 60 percent of patients may have worsening symptoms, especially worsening sensory symptom, when they’re exposed to heat. We don’t entirely know but we believe this is related to slow conduction at times of heat exposure.”

    “Heat can be a factor; we see more evidence these days of linking low Vitamin D to MS and the severity of the disease. So we advise patient not to expose themselves directly to sunlight, and to avoid stress as he or she can have an attack or relapse when under stress,” explained the specialist.

    There is no known cure for MS, current treatment aims only at stabilising and preventing the progression of the disease towards disability or cognitive impairment. “Most of the treatments that we currently use is to work on immunity, either as immuno-modulators (start) or immuno suppressants (extreme cases),” said Dr Al Saadi.

    For this reason, he suggested that MS cases in the region should be looked at more carefully, and studies should be conducted to determine the exact prevalence of the disorder.

    “We started to look at the genetic profile of patients who acquired this disorder in this part of the world. We are studying their treatment response in order to compare them to those in other parts of the world,” Dr Al Saadi noted.

    “We plan to generate a database that would incorporate all the data – that would be a start,” the neurologist added.

    MS affects patient in several domains - their mobility, ability to function normally in the society, obtain full time job and maintain their job. It also affects their marital and family relationships due to the financial burden of the disease and their employment due to loss of productivity.

    Source: Khaleej Times © 2011 Khaleej Times (17/01/11)

    Seasonality of admissions with multiple sclerosis in Scotland

    MS MRIBackground and purpose:  Previous studies have described a seasonal pattern of MS relapse risk. Vitamin D and infectious triggers are two major candidate environmental risk factors proposed to account for this effect. We aimed to assess MS admissions in Scotland for a possible effect of seasonality.

    Methods:  Acute admissions with MS were obtained from the Scottish Morbidity Register between 1997 and 2009. We compared the pattern of these to admissions with other diagnoses.

    Results:  We obtained data on 7098 MS and 6 243 690 non-MS acute and day-case admissions. We found a significant difference in acute MS admissions compared with admissions with other diagnoses (P = 0.0015). There was a significant excess of Scottish MS admissions in April and June with nadirs in March and October.

    Conclusions:  Admissions with MS show a significant seasonal variation throughout the year. Further work will be needed to identify candidate environmental factors with certainty.

    Handel, A. E., Disanto, G., Jarvis, L., McLaughlin, R., Fries, A., Ebers, G. C. and Ramagopalan, S. V. Article first published online: 29 DEC 2010

    Source: European Journal Of Neurology DOI: 10.1111/j.1468-1331.2010.03318.x Copyright (c) 1999-2010 John Wiley & Sons, Inc. (04/01/11)

    Multiple Sclerosis in Iran: A Demographic Study of 8,000 Patients

    MS DiagnossisAbstract
    Background: Iran was formerly considered to be located in a low prevalence zone for multiple sclerosis (MS). During the last decade the number of patients has increased. This study was conducted to estimate the prevalence of MS in the capital city of the country.

    Methods: We re-evaluated the files of all patients who had registered at the Iranian Multiple Sclerosis Society during a 10-year period.

    Results: 8,146 patients (72.3% female, 27.7% male) with a female-to-male ratio of 2.60 had registered. Mean age of disease onset was 27.24 (SD: 8.32). A relapsing-remitting pattern was recognized in 84.9% of the patients. The number of new registrations tripled from 2002 to 2008 and the female-to-male ratio increased from 2 to 3.12. The prevalence of MS in Tehran is estimated to be at least 51.9 per 100,000. Visual impairment was the main presenting symptom.

    Conclusions: It seems that the prevalence of MS has increased to a medium-to-high risk level in Iran. The mean age of onset was similar to other studies but the calculated prevalence of early onset MS was increased. The cumulative data indicates that the female-to-male ratio is increasing annually.

    Mohammad Ali Sahraiana, a,b, Saeideh Khorramniaa, Mina Mohammad Ebrahima, Zahra Moinfara, Jamshid Lotfic, Hossien Pakdamand

    a Sina MS Research Center, Sina Hospital, and
    b Department of Neurology, Sina Hospital, Tehran University of Medical Sciences,
    c Iranian MS Society, and
    d Department of Neurology, Shahid Beheshti University of Medical Sciences, Tehran, Iran

    Source: European Neurology Copyright © 2010 S. Karger AG, Basel  (15/11/10)

    Patient-orientated longitudinal study of MS in south west England
    MS DiagnosisThere is a need for greater understanding of the impact of multiple sclerosis (MS) from the perspective of individuals with the condition. The South West Impact of MS Project (SWIMS) has been designed to improve understanding of disease impact using a patient-centred approach.

    The purpose is to (1) develop improved measurement instruments for clinical trials, (2) evaluate longitudinal performance of a variety of patient-reported outcome measures, (3) develop prognostic predictors for use in individualising drug treatment for patients, particularly early on in the disease course.

    Methods: This is a patient-centred, prospective, longitudinal study of multiple sclerosis and clinically isolated syndrome (CIS) in south west England. The study area comprises two counties with a population of approximately 1.7 million and an estimated 1,800 cases of MS.

    Self-completion questionnaires are administered to participants every six months (for people with MS) or 12 months (CIS). Here we present descriptive statistics of the baseline data provided by 967 participants with MS.

    Results: Seventy-five percent of those approached consented to participate.

    The male:female ratio was 1.00:3.01 (n=967). Average (standard deviation) age at time of entry to SWIMS was 51.6 (11.5) years (n=961) and median (interquartile range) time since first symptom was 13.3 (6.8 to 24.5) years (n=934).

    Fatigue was the most commonly reported symptom, with 80% of participants experiencing fatigue at baseline. Although medication use for symptom control was common, there was little evidence of effectiveness, particularly for fatigue.

    Nineteen percent of participants were unable to classify their subtype of MS. When patient-reported subtype was compared to neurologist assessment for a sample of participants (n=396), agreement in disease sub-type was achieved in 63% of cases.

    There were 836 relapses, reported by 931 participants, in the twelve months prior to baseline. 23% of the relapsing-remitting group and 12% of the total sample were receiving disease-modifying therapy at baseline.

    Conclusions: Demographics of this sample were similar to published data for the UK.

    Overall, the results broadly reflect clinical experience in confirming high symptom prevalence, with relatively little complete symptom relief. Participants often had difficulty in defining MS relapses and their own MS type.

    Author: John Zajicek Wendy Ingram Jane Vickery Siobhan Creanor Dave Wright Jeremy Hobart
    Credits/Source: BMC Neurology 2010, 10:88

    Source: 7th Space Interactive © 2010 7thSpace Interactive (08/10/10)

    Multiple Sclerosis prevalence in New Zealand
    New Zealand FlagMS prevalence in New Zealand, an ethnically and latitudinally diverse country

    Abstract
    Background: The prevalence of multiple sclerosis (MS) is not uniform, with a latitudinal gradient of prevalence present in most studies. Understanding the drivers of this gradient may allow a better understanding of the environmental factors involved in MS pathogenesis.

    Method: The New Zealand national MS prevalence study (NZMSPS) is a cross-sectional study of people with definite MS (DMS) (McDonald criteria 2005) resident in New Zealand on census night, 7 March 2006, utilizing multiple sources of notification. Capture-recapture analysis (CRA) was used to estimate missing cases.

    Results: Of 2917 people with DMS identified, the crude prevalence was 72.4 per 100,000 population, and 73.1 per 100,000 when age-standardized to the European population. CRA estimated that 96.7% of cases were identified. A latitudinal gradient was seen with MS prevalence increasing three-fold from the North (35 degrees S) to the South (48 degrees S). The gradient was non-uniform; females with relapsing-remitting/secondary-progressive (RRMS/SPMS) disease have a gradient 11 times greater than males with primary-progressive MS (p < 1 x 10(-7)). DMS was significantly less common among those of Māori ethnicity.

    Conclusions: This study confirms the presence of a robust latitudinal gradient of MS prevalence in New Zealand. This gradient is largely driven by European females with the RRMS/SPMS phenotype. These results indicate that the environmental factors that underlie the latitudinal gradient act differentially by gender, ethnicity and MS phenotype. A better understanding of these factors may allow more targeted MS therapies aimed at modifiable environmental triggers at the population level.

    Taylor BV, Pearson JF, Clarke G, Mason DF, Abernethy DA, Willoughby E, Sabel C.

    Menzies Research Institute, University of Tasmania, Hobart, Australia.

    Source: Pubmed PMID: 20813774 (08/09/10)

    The changing demographic pattern of multiple sclerosis epidemiology
    EarthAbstract
    The uneven distribution of multiple sclerosis (MS) across populations can be attributed to differences in genes and the environment and their interaction.

    Prevalence and incidence surveys could be affected by inaccuracy of diagnosis and ascertainment, and prevalence also depends on survival.

    These sources of error might play a part in the geographical and temporal variations.

    Our literature search and meta-regression analyses indicated an almost universal increase in prevalence and incidence of MS over time; they challenge the well accepted theory of a latitudinal gradient of incidence of MS in Europe and North America, while this gradient is still apparent for Australia and New Zealand; and suggest a general, although not ubiquitous, increase in incidence of MS in females.

    The latter observation should prompt epidemiological studies to focus on changes in lifestyle in females.

    New insights into gene-environment and gene-gene interactions complicate interpretations of demographic epidemiology and have made obsolete the idea of simple causative associations between genes or the environment and MS.

    Lancet Neurol. 2010 May;9(5):520-32. Copyright 2010 Elsevier Ltd. All rights reserved.

    Koch-Henriksen N, Sørensen PS.

    Department of Neurology, Aarhus University Hospital in Aalborg, Aalborg, Denmark.

    Source: Pubmed PMID: 20398859

    Epidemiology of multiple sclerosis in Kuwait: new trends in incidence and prevalence

    Kuwait FlagThe epidemiology of multiple sclerosis (MS) is undergoing dramatic changes; MS is occurring with increased frequency in many parts of the world. In this retrospective study, we examined the changes in incidence and prevalence of MS in Kuwait in the period between 1993 and 2000.

    We analyzed the records of patients with clinically defined and laboratory supported MS.

    The total incidence rate increased from 1.05/100,000 population in 1993 to 2.62/100,000 in 2000.

    The increased incidence of MS was most pronounced among Kuwaiti women (from 2.26/100,000 in 1993 to 7.79/100,000 in 2000. The total prevalence rate increased from 6.68/100,000 in 1993 to 14.77/100,000 in 2000.

    It was much higher for Kuwaitis (31.15/100,000), as compared to non-Kuwaitis (5.55/ 100,000), in a complete reversal of the pattern observed before 1990.

    The prevalence was also higher among Kuwaiti women (35.54/100,000), as compared with Kuwaiti men (26.65/100,000).

    In conclusion, the incidence and prevalence of MS in Kuwait has increased between the early and late 1990s with no signs of leveling off. In a geographic area that was previously associated with low prevalence, local environmental factors may be responsible for these dramatic changes.

    Source: Department of Neurology, Ibn Sina Hospital, Safat, Kuwait. (23/04/10)

    The rising prevalence and changing age distribution of multiple sclerosis in Manitoba

    Canadian Flag
    Summary
    Several studies suggest an increasing prevalence of multiple sclerosis (MS) in Canada. Canadian MS neurologist and researcher Dr. Marrie and colleagues aimed to validate a case definition for MS using administrative health insurance data, and to describe the incidence and prevalence of MS in Manitoba, Canada. Neurology. 2010 Jan 13. [Epub ahead of print]

    Details
    Provincial administrative claims data were reviewed to identify persons with demyelinating disease using International Classification of Diseases 9/10 codes and prescription claims. Questionnaires were mailed to 2,000 randomly selected persons with an encounter for demyelinating disease, requesting permission for medical records review. Diagnoses abstracted from medical records were used as the gold standard to evaluate candidate case definitions using administrative data.

    From 1984 to 1997, cases of MS using claims data were defined as persons with seven or more  medical contacts for MS. From 1998 onward, cases were defined as persons with three or more medical contacts. As compared to medical records, this definition had a positive predictive value of 80.5% and negative predictive value of 75.5%. From 1998 to 2006, the average age- and sex-adjusted annual incidence of MS per 100,000 population was 11.4 (95% confidence interval [CI] 10.7-12.0). The age-adjusted prevalence of MS per 100,000 population increased from 32.6 (95% CI 29.4-35.8) in 1984 to 226.7 (95% CI 218.1-235.3) in 2006, with the peak prevalence shifting to older age groups.

    Authors conclude that the prevalence of multiple sclerosis (MS) in Manitoba is among the highest in the world. The rising prevalence with minimally changing incidence suggests improving survival. This study supports the use of administrative data to develop case definitions and further define the epidemiology of MS.

    Source: MS Society of Canada National Research and Programs (03/02/10)

    Multiple sclerosis incidence in the Faroe Islands 1986–2007
    Faroe IslandsJoensen P.

    Multiple sclerosis incidence in the Faroe Islands 1986 - 2007.

    Objective - Epidemiological studies of the isolated Faroese population in 1945 identified a high annual incidence of multiple sclerosis (MS) of 10/100,000. At the time, there was speculation that the disease was brought to the country by British occupation forces resident in the islands from 1940 to 1945. The objective of the current study is to determine the incidence of diagnosis of MS in the Faroe Islands during the period 1986 - 2007.

    Methods -All patients in the Faroe Islands diagnosed with MS from July 1, 1986 to July 1, 2007 are documented in the current longitudinal, prospective study. The diagnosis is based on clinical observation, magnetic resonance imaging scanning, cerebrospinal fluid tests, and visual evoked potential response testing.

    Results -The incidence of MS during the period 1986 - 2007 is 4.5/100,000 annually. This is generally of the same order of magnitude as other research findings in Scandinavia and Iceland. The incidence of MS from 1986 to 2007 is about double the incidence in the Faroe Islands for the period from 1940 to 1986, calculated to be 2.7/100,000 annually.

    Conclusion -The observed incidence of MS in the Faroe Islands, where the population is genetically homogeneous and where the diet exposes the population to neuro-toxic contamination, is at the same level as found in other high-risk regions. The former detected epidemics of MS in Faroe Islands seems apparently to have leveled out and could not be recognized in the recent period covered by the present survey.

    Source:  Acta Neurol Scand: DOI: 10.1111/j.1600-0404.2009.01252.x.© 2009 The Author Journal compilation © 2009 Blackwell Munksgaard.(17/12/09)

    Effect of immigration on Multiple Sclerosis sex ratio in Canada: the Canadian collaborative study

    Canada FlagBACKGROUND: The ratio of female to male (F:M) MS cases varies geographically, generally being greater in areas of high prevalence. In many regions, including Canada, rising MS incidence in women has been implied by the marked increase in F:M ratio.

    METHODS: We examined the F:M ratio over time in MS patients in the Canadian Collaborative Study born outside of Canada, with onset post-migration (n=2531). We compared the (y.o.b.) was a significant predictor of sex ratio in immigrants (chi 2 = 21.4, p<0.001 correlation r= 0.61). The rate of change of sex ratio was increasing in all migrant subgroups (by a factor of 1.16 per 10y period, p<0.001), with the steepest increase observed in those from Southern Europe trends to native-born Canadians, by region of origin and age at migration.

    RESULTS: Regression analysis showed that year of birth (1.27/10y, p<0.001). The overall immigrant F:M ratio was 2.17, but varied by country of origin. It was significantly lower in migrants from Southern Europe compared to Northern Europe or USA (1.89 vs 2.14 and 2.86, p=0.023 and p=0.0003, respectively). Increasing age at immigration was associated with decreasing sex ratio (p=0.041). The sex ratio of individuals migrating <21 was significantly higher than those migrating >/=21 (2.79 vs 1.96, p=0.004).

    CONCLUSIONS: MS Sex ratio in immigrants to Canada is increasing but variable by region of origin and influenced by age at migration. The findings highlight the importance of environmental effect(s) in MS risk, which are likely gender-specific.

    Source: Pubmed PMID: 19710047 (02/09/09)

    Scientists seek volunteers for part two of multiple sclerosis research

    Scottish Flag

    Scientists working on a major study into the causes of multiple sclerosis (MS) are appealing for volunteers from Shetland to take part in the second phase of their work.

    Funded by the MS Society and led by Dr Jim Wilson of the Uni­versity of Edinburgh and Dr Eliza­beth Visser of the University of Aberdeen, the research aims to find a correlation between MS and genes and, specifically, whether an “MS gene” exists. The first phase of the study was launched last year and is progressing well, according to Dr Wilson.

    Clinical research fellow on the project Dr Visser, a neurologist, has been in Shetland a number of times dealing with volunteers who came forward for the first phase and will be here every month for a week at a time until the autumn to conduct the next stage of the work.

    Currently around one in every 250 people in Shetland and Orkney suffers from the condition. This figure is around double that of the Scottish mainland average, putting Shetland and Orkney in the unfor­tunate position of having the highest rates in the world.

    Dr Wilson, originally from Ork­ney, said: “It’s not unlikely that there may be undiscovered genes in Ork­ney and Shetland as [the prevalence of MS] is so high.”

    The link between genes and medical conditions can be extremely important. Dr Wilson explained: “Finding the genes which increase the risk of developing the disease is the first step to finding new treatments.”

    The second phase of the research requires comparison with non MS patients. To do this, the study is recruiting volunteers to act as “controls”, so that their DNA can be related to the genes carried by people with MS.

    Dr Wilson said: “By this I mean a group of people who share certain characteristics with the MS patients – for example being the same age and sex, and coming from Shetland, so we can compare the DNA of the patients with that of the matched comparison group.”

    To do this they are looking for people who are from Shetland, born between 1930 and 1990 and have no family members with MS. If you would like to help with the study, call 0131 651 1643 or email [email protected].

    An appointment to meet Dr Visser will be made, where she will go through a short questionnaire and take a blood test.

    Dr Visser explained what a volunteer can expect: “We’ll have a bit of a chat about their medical history and do the questionnaire which we’ve created, basically to make sure they don’t have MS,” she said. “The first 10 or so controls will be examined and then we’ll take a small blood test. This can be done at their GP or at home.”

    MS is a chronic auto-immune disease caused by damage to myelin, the protective sheath which sur­rounds the spinal cord and central nervous system. This leads to dis­ruption to the nerve signals that control muscle co-ordination, strength, sensation and vision.

    It is the most common debilitating neurological disease in the UK, affecting around 100,000 people.

    Despite the frequency of cases, the range and complexity of symp­toms> which can occur means there is no single diagnostic test for the disease.

    Other conditions with similar symptoms often have to be ruled out, however some of the tests which can lead to diagnosis include MRI scans, neurological examinations and lumbar puncture, in which spinal fluid is examined for abnormalities.

    The variety in symptoms and their severity often means different experiences for each person, how­ever it usually means life is unpredictable.

    The study has been welcomed by the members of the community.

    Ann MacLellan, 66, from Lerwick, was diagnosed with MS 24 years ago. She said: “A lot of folk have wondered why something’s not been done before as there are so many people affected by it.”

    Despite the length of time she has suffered, Mrs MacLellan’s symp­toms have been manageable. “Really I’ve kept very well, I’ve been lucky, other than if I overdo it my legs get weak. That and the tiredness. But a lot of folk wouldn’t know I had it.”

    However for Ian Richardson, 52, from Unst, MS has had a huge impact on day to day life.

    “It’s affected everything. It defines how you live, whether you want it or not,” he said.

    Diagnosed five years ago, his symptoms vary from time to time, with the worst periods preventing him from getting up the stairs.

    However while mobility is a huge issue, there are other sides to the disease.

    Mr Richardson explained: “The major problem that develops is your ability to deal with it. The mental attack is often worse than the physical, the drain of knowing you can’t do simple tasks.”

    He continued: “I don’t like having to ask for things, but I have to. The little things become more important; it’s the frustration of that.”

    However Mr Richardson said he is “very impressed” with the standard of service provided in Shetland.

    He said: “Not just for MS, with anything of this type, it’s one of the best places to be. The entire house was fitted out with grab-bars and the MS Society locally has assisted me a great deal.”

    Speaking about the study itself, Mr Richardson said: “Anything that develops a better knowledge of it and lead to the golden aim of destroying it is a great thing. It all helps.”

    Dr Wilson and his team are, at the moment, primarily looking for people who do not have any cases of MS in their family, but he advised that anyone who does and would like to help should encourage their friends or neighbours to get involved.

    Dr Visser continued: “The study is very important as the disease is very common in Orkney and Shetland, so it will be interesting to see if there is anything special [which would] make people more prone to it in the area.

    “I’d just like to say a big thank you to everyone who’s been involved so far. We’re very grateful, we’ve had a remarkable response. If anyone would like to be involved or help, now is the time to say. We’re very excited about this study and we’re really hoping it will reveal a bit more about MS.”

    Source: The Shetland Times © 1996–2008 The Shetland Times (23/01/09)

    Increasing prevalence and incidence of Multiple Sclerosis in South East Wales

    Questions for rise in MS

    Epidemiological studies of multiple sclerosis suggest a trend of increasing disease prevalence in susceptible populations. The reasons for this are unclear and may be the results of methodological differences between studies, incomplete ascertainment or advances in technologies that allow the increased identification of early or mild disease. In addition, direct comparison of cross-sectional prevalence estimates performed in different epochs in ethnically and geographically distinct populations may be inappropriate.

    Using detailed phenotypic information and standardised methodology we have resurveyed a geographically defined Welsh population after a significant interval, establishing contemporary prevalence rates and examining demographic and clinical data to determine causes of changing disease frequency.

    Disease prevalence rose 45% from 101 to 146 per 100,000 population over 20 years. The greatest increase was observed in females between the ages of 45 and 54. No significant increase in disease frequency was observed in the male population overall, or within specific age groups. There was no demographic evidence for a pattern of earlier age at onset or diagnosis to explain increased disease frequency or decrease in mean age of the prevalent population. In addition we failed to identify a pattern of recognition of patients with less severe disability. Although there was a modest 13% increase of 2.2 years in mean disease duration, and 8 new previously prevalent patients were identified, the main cause of rising disease frequency was related to a 2.8 fold increase in disease incidence for females over 23 years from 2.65 to 7.30/100,000/year increasing sex ratio of incident patients from 1.8 to 4.3 F:M.

    Recent change in disease incidence and prevalence in this population is likely to be the result of environmental factors that have been operative in the last few decades in females alone and infers avoidable risk factors. Modelling of current overall incidence suggests a further increase in prevalence to 260 per 100,000 population within the next 20-40 years. Further studies are needed in order to identify recent changes in sex specific environment and lifestyle that confer susceptibility.

    Claire L Hirst 1, Gillian Ingram 1, Trevor P Pickersgill 1, Robert J Swingler 2, D A S Compston 3 and Neil P Robertson 1

    1 University Hospital of Wales, United Kingdom
    2 Ninewells Hospital & Medical School, United Kingdom
    3 Addenbrooke's Hospital, United Kingdom

    Source: JNNP Online © 2008 by the BMJ Publishing Group Ltd. (20/10/08)

    The Atlas of MS
    Prevalence of MS worldwide


    The Atlas of MS is most comprehensive study ever undertaken of the occurrence of multiple sclerosis (MS) around the world and the availability of resources to provide services and support to people with MS.

    The Atlas is the result of three years of research coordinated by the World Health Organization (WHO) and MSIF. More than 100 countries participated in the study, replacing impressions and opinions with facts and figures. Topics covered by the Atlas include:

        * Epidemiology – prevalence, incidence and total numbers
        * Epidemiology – average age of onset and male/female ratio
        * MS organisations
        * Diagnosis
        * Information
        * Support and services
        * Drugs and treatment
        * Human resources
        * Disability entitlements, legislation and social insurance
        * Major issues

    For access to the Atlas and more about it please visit the MSIF Website.


    MSIF Logo

    Worldwide Multiple Sclerosis survey seeks answers

    MS Map

    The number of people suffering from the neurological disease multiple sclerosis (MS) worldwide could be far more than the estimated 1.3m, researchers say.

    A major new study into the disease has been launched by the Multiple Sclerosis International Federation (MSIF) and the World Health Organization (WHO).

    They hope to answer key questions about MS, the cause of which is unclear.

    Governments are being urged to invest more in education and services to improve sufferers' quality of life.

    Specialist equipment

    MS is a degenerative disease of the central nervous system. It typically emerges in young adults and can lead to severe disability.

    Symptoms often include aching, loss of balance, muscle spasm and paralysis and general fatigue.

    But there are still many mysteries surrounding MS.

    It is not clear what causes it or why women are twice as likely as men to develop it. Or why it is so much more common in colder countries than warmer ones.

    The study has found that although most cases occur in the developed world, every country that took part in the survey, rich or poor, had some instances.

    Peer Baneke, the chief executive of the MSIF, says the rough estimate of 1.3m cases worldwide is probably a big underestimation.

    "The diagnosis of multiple sclerosis is very difficult," he said. "You really need neurologists who have the knowledge to distinguish it from other things."

    It also needs specialist equipment which poorer health systems simply cannot access. MRI scanners, for example, are in short supply in the developing world.

    "There must be many people out there who we just don't know about," said Mr Baneke.

    Stigma

    The survey also looks at the experiences of people with MS, the BBC's Jill McGivering reports.

    In many countries, sufferers face stigma and misunderstanding.

    Kanya Puspokusumo, a 36-year-old Indonesian, was diagnosed in 2001.

    She said that some people thought MS was similar to Aids. Even though she explained it was not transmitted from one person to another, many still excluded her socially.

    Dr Hithaishi Weerakoon is a doctor in Sri Lanka who was diagnosed with MS more than a decade ago.

    Many families do not acknowledge MS, she says, and keep affected family members hidden away.

    Others say, wrongly, that it has developed as a condition because of sins in a past life.

    Those associated with the study say this is an important start - but that far more research needs to be done, especially in developing countries where the process of identifying cases systematically and collecting data is still at a very early stage.

    Source: BBC News © BBC 2008 (18/09/08)

    Multiple sclerosis study confirms prevalence of the disease in Canada

    Canadian Flag

    Canada has one of the highest rates of multiple sclerosis in the world and the country fails in providing adequate services for sufferers, a new study suggests.

    The global survey by the World Health Organization and the Multiple Sclerosis International Federation focuses on the prevalence of the disease in more than 100 countries representing almost 88 per cent of the world's population.

    The Atlas of Multiple Sclerosis was launched on Wednesday at the beginning of a four-day conference on the disease.

    The study said MS strikes 133 people out of every 100,000 in Canada, the fifth-highest rate among the nations surveyed between 2004 and 2007.

    Only in the United States, Germany, Norway and Hungary was the disease more prevalent.

    Allan Thompson, a top official with the MS International Federation, says Canada has always been a model in terms of the treatment of MS and in addressing quality of life for sufferers.

    "But I think even in Canada the services could be better," Thompson said in an interview, noting that support for employment is a big issue for Canadians with MS.

    "Staying in employment is so important for quality of life and self-esteem and we just simply ignore it in most countries and Canada would probably fall into that group as well."

    Stewart Wong, a spokesman for the Multiple Sclerosis Society of Canada, agreed.

    "You can't easily earn income without reducing the benefits that are given to you by the government in a seamless way," he said.

    "It means that in many cases people will choose not to work even if they are able to so they can afford their treatments and that's a very unfortunate thing."

    Still, the study also highlights where Canada succeeds, Wong said.

    "If someone has a first symptom of MS, they can go to a doctor, they can go to a neurologist, they can go to a support group and that's all within a couple of phone calls," he said.

    "That stands out for us."

    But Thompson believes the overall results highlight the lack of services, expertise and training in the area of MS worldwide.

    "We're failing miserably and we're failing in even the most affluent countries," he said. "That's something that needs to be addressed urgently for which there's really no excuse."

    Multiple sclerosis is a chronic disease that attacks the central nervous system, causing inflammation and damage. It has also been linked to environmental and genetic factors.

    Wong said 2.5 million people worldwide have MS.

    The MS Society of Canada says 55,000 Canadians have the disease.

    Source: The Canadian Press © 2008 The Canadian Press.(18/09/08)

    Multiple Sclerosis world first in New Zealand study

    New Zealand Flag

    New Zealand has become the first country in the world to fully research the incidence of multiple sclerosis (MS) over an entire country.

    A jointly funded report by the Multiple Sclerosis Society and the Health Research Council, released today, says that close to 3000 people have been clinically identified as having MS (or 71.9 per 100,000 people), with a further 1200 potentially with the condition.

    The $500,000 report, which took nearly two years to compile, shows that the prevalence of MS is significantly related to regions of the country -- increasing from 50.8 people per 100,000 in Northland to 134.6 people per 100,000 in Southland.

    Worldwide, MS becomes more common the further away from the equator you are.

    MS is an auto-immune disease where the body produces a misdirected immune system attack on the central nervous system. There is no known cure.

    The symptoms of MS usually appear and disappear unpredictably and they vary from person to person. Common symptoms include: weak or uncoordinated limbs, impaired balance, urinary dysfunction and vision problems as well as fatigue.

    MS affects women at a rate three times that of men and is most often diagnosed in the late 20s to early 30s.

    MSNZ national director Graham Billings said New Zealand's geographic spread, small population and consistent health services meant the study was possible.

    It would become the ground work for a number of other studies into MS and trying to understand the disease, he said.

    The cause of MS is still not known. However, researchers are closer to finding the answer and think that both the genetic and environmental factors are important.

    "The real problem is there doesn't appear to be a single silver bullet. It's clearly possible that geographic location has something to do with it, and possibly a link to exposure to sunlight and vitamin D. And clearly there is some element of genetic background. Scotland has the highest incidence in the world," Mr Billings said.

    Aspects of the results will be presented to the International MS Federation conference in Canada later this year.

    Regional data of people with MS (followed by per 100,000):
    Northland 82 (50.8)
    Auckland 732 (59)
    Waikato 177 (46.4)
    Bay of Plenty 132 (50)
    Gisborne 20 (46.7)
    Hawkes Bay 82 (54.3)
    Taranaki 72 (66.8)
    Manawatu-Wanganui 120 (54)
    Wellington 383 (86.2)
    Nelson-Tasman 75 (77.7)
    Marlborough 42 (86.8)
    Canterbury 557 (103)
    West Coast 40 (119.2)
    Otago 234 (119.3)
    Southland 148 (134.6).

    People in NZ with MS:
    male 720 or 24.86 percent, female 2176 or 75.14 percent.

    Source: stuff.co.nz © Fairfax New Zealand Limited 2008 (01/09/08)

    Seeking answers to origin of MS
    By Elizabeth Quigley
    BBC Radio Scotland's The Investigation

    As a journalist it's my job to ask questions and try to find out answers, so when I heard that Scotland has the highest rate of Multiple Sclerosis in the world I obviously wanted to know why.

    And that's exactly what BBC Radio Scotland's Investigation is all about.

    But for me this investigation is more than just out of professional interest.

    I have a very personal interest in discovering why there is this curious connection between the country I was born and grew up in and MS - more than seven years ago I was told I had MS.

    Scotland has a very special place in the world of MS.

    It is generally accepted this country has the highest rate in the world and there are an estimated 10,500 people coping with MS in Scotland.

    It's the most common disabling neurological disease among young adults in Britain.

    So what is it exactly?

    Well here's the science bit ... something called myelin covers the nerve fibres of the central nervous system - but in MS it's damaged and that means messages between the brain and other parts of the body are disrupted.

    That can cause a range of possible symptoms - fatigue, balance and mobility problems, weakness, numbness and speech problems - the only thing that's certain about MS is it's unpredictability.

    Latitude link

    But why is it so prevalent here in Scotland? Well the simple answer is - no-one knows.

    Across the UK about one in every 800 people has MS.

    But in Scotland about one person in every 500 has MS.

    It's far more common here and in countries like Canada, Scandinavia and Ireland than it is in countries nearer the equator.

    MS can often quite literally be mapped along lines of latitude.

    Another thing we don't know is exactly how many people have MS in Scotland

    It's more common in higher latitudes but confusingly that's not the only factor in explaining why and where MS occurs.

    You can't catch MS - it's not contagious - and you can't directly inherit MS, but genetic factors do seem to play some kind of role.

    Another theory is that it could be down to a virus that triggers the onset of MS.

    Diet and climate could have something to do with it but basically no-one has a definitive answer.

    Another thing we don't know is exactly how many people have MS in Scotland. But that looks set to change with the development of a register of everyone who has the condition.

    New centre

    The MS Society in Scotland has begun setting up just such a database along with the NHS in Scotland.

    An MS register has already been established in Canada.

    For a quarter of a century clinicians there have been gathering details of just about everyone diagnosed with MS - and keeping a national register.

    Keeping a register of who has MS could be crucial in solving the puzzle of the condition - as could a brand new centre in Edinburgh - the MS Society Edinburgh University Translational Research centre.

    It'll be the UK's first ever major research centre into the condition - and it's been funded thanks largely to a substantial donation from the author J K Rowling, whose mother had MS.

    We know where MS occurs in the world, we know what it is but the answer to the question why is still elusive.

    Source: BBC Scotland © BBC 2007 (05/11/07)

    Migration and multiple sclerosis: The French West Indies experience.

    The French West Indies (FWI), i.e., the islands of Martinique and Guadeloupe, have recently experienced the emergence of multiple sclerosis (MS).

    This epidemiological upheaval followed a return migration of the FWI population that had previously migrated to continental France.

    The prevalence MS was 14.8/10(5) (95% CI: 11.9-17.7) on Dec. 31, 1999 and its mean annual incidence was 1.4/10(5) (95% CI: 1.0-1.8) for the period July 1997 to June 2002.

    The prevalence of MS in Martinique, that received more return migration, is higher than that of Guadeloupe (21.0/10(5)vs. 8.5/10(5)).

    This emergence of MS has been accompanied also by an inversion of its clinical spectrum, with recurrent neuromyelitis optica accounting for only 17.8% of cases.

    The standardized ratio of the incidence of MS among migrants is 1.71 (95% CI: 1.19-2.38; P<0.01) and if migration to continental France occurred before the age of 15 it is 4.05 (95% CI: 2.17-6.83; P<0.0001).

    According to recent data, a drastic reduction in exposure to sunlight and to intestinal parasites during childhood, found preferentially among migrants, are possible environmental factors responsible for this emergence.

    Cabre P. Service de Neurologie, CHU Fort de France, Hôpital Pierre Zobda Quitman, BP 97261, Fort de France, Martinique, France.

    Source: J Neurol Sci. 2007 Nov 15;262(1-2):117-21. (30/10/07

    Incidence of multiple sclerosis in the United Kingdom : Findings from a population-based cohort.
    Existing data on the incidence of multiple sclerosis (MS) in the UK have some limitations.

    Few studies have reported age- and sex-specific incidence rates of MS, and none of those is based on a large sample of the general population. Further, no published reports have provided age- and sex-specific incidence rates of MS by clinical course from onset.

    To estimate the age- and sex-specific incidence rate and lifetime risk of multiple sclerosis, we identified all new cases of MS during the period 1993-2000 in the General Practice Research Database, which includes health information on over three million Britons.

    Based on 642 incident cases, incidence rates of MS adjusted to the world population were 7.2 (95 % CI 6.5, 7.8) in women and 3.1 (95 % CI 2.6, 3.5) in men. The incidence of MS with relapsing-remitting onset was higher in women than in men (incidence rate ratio 2.5, 95% CI 2.1, 3.1), but there were no sex differences for primary-progressive MS (incidence rate ratio 1.1, 95% CI 0.7, 1.8). The estimated lifetime risk from birth of receiving an MS diagnosis was 5.3 per 1,000 in women and 2.3 per 1,000 in men.

    These results confirm the relatively high incidence of MS in the UK and show marked differences in the sex-specific pattern of MS incidence by clinical course from onset.

    Alonso A, Jick SS, Olek MJ, Hernán MA. Dept. of Epidemiology, Harvard School of Public Health

    Source: Journal of Neurology October 2007 (03/10/07)

    Incidence and prevalence of multiple sclerosis in Saskatoon, Saskatchewan
    Objective: To determine the incidence of multiple sclerosis (MS) in a longitudinal surveillance over 35 years and to estimate the prevalence rate in Saskatoon, Saskatchewan, on January 1, 2005.

    Methods: A population-based registry was established in 1969, and identification of cases continued to 2005, from medical records, physicians, neurologists, community and provincial resources. A modified classification of Allison and Millar and the Schumacher diagnostic criteria were originally applied, and patients with definite and probable MS were included. The rates were age- and sex-adjusted to the US, European, and world 2000 populations.

    Results: From 1970 to 2004, there were 558 incidence cases identified, 402 women and 156 men, for a sex ratio of 2.6:1 The average annual incidence rate was 9.5 in 100,000 (95% CI 8.8 to 10.4) and was stable over the three decades. The innate risk or residence at onset rate was 197 in 100,000 (95% CI 170 to 226). The crude prevalence rate for the living 587 cases on January 1, 2005, was 298.3 in 100,000 (95% CI 274.7 to 323.6).

    Conclusions: The incidence and prevalence rates adjusted to the standardised populations were statistically higher than the longitudinal European studies and similar to North American studies. Our incidence study confirms the high risk of multiple sclerosis (MS) in Saskatoon, and these rates seem to be stable over the past 35 years. The high crude prevalence rate results from an accumulation of incidence and nonresident cases over time. Long-term follow-up studies and comparison with standardised populations are recommended to estimate reliable incidence and the true risk of MS in the world.

    Walter J. Hader, MD, FRCPC and Irene M.L. Yee, MSc

    From the Department of Physical Medicine and Rehabilitation (W.J.H.), University of Saskatchewan, Saskatoon, Saskatchewan, Canada; and the Faculty of Medicine (I.M.L.Y.), Department of Medical Genetics, University of British Columbia, Vancouver, Canada.

    Source: Neurology Copyright © 2007 by AAN Enterprises, Inc. (19/09/07)

    Multiple Sclerosis Cases Higher In Eastern Washington

    The Palouse area of eastern Washington is one of the nation's hot spots in terms of reported cases of MS.

    These hot spots are located all over the country: New York, Missouri, Kansas, and, as it turns out, eastern Washington.

    Brett Parmenter is an assistant professor in the Department of Psychology at Washington State University:

    Brett Parmenter: "In eastern Washington there are about 200 people diagnosed with MS for every 100,000 people living in the area. What's been documented on the west side‚ that‚ about 65 people with MS for every 100,000 people."

    Parmenter is conducting research into this debilitating neurological disorder but says scientists don't yet know why, for example, the numbers would be so much higher in eastern Washington than western Washington.

    Brett Parmenter: "There are various hot spots throughout the country, and no one is really sure as to why some places you just see more MS than others."

    Another research team from the Oregon Health and Sciences University is collecting data on the actual number of cases of MS by age and by gender for each county in eastern Washington.

    M.S. affects 400,000 in the United States and 2 and half million people around the world. Its cause isn't known.

    Source: OPB News © 2007 Northwest News Network (18/09/07)

    Multiple Sclerosis Rates Up 50%
    Multiple sclerosis (MS) may be 50% more common in the U.S. than previously thought, according to a new research review.

    Almost one in 1,000 people in the U.S. have MS, according to the review.

    "Our estimate of MS prevalence is about 50% higher than a comprehensive review from 1982," says researcher Deborah Hirtz, MD, in an American Academy of Neurology news release.

    "Whether this reflects improvement in diagnosis or whether incidence is actually increasing deserves further study," says Hirtz, who works at the National Institute of Neurological Disorders and Stroke.

    Hirtz and colleagues analysed about 500 studies published from 1990 to 2005 to track 12 neurological disorders.

    Their findings appear in the Jan. 30 issue of Neurology.

    Source: WebMD ©2005-2006 WebMD, Inc. All rights reserved.(28/06/07)

    State Has High Rate Of Multiple Sclerosis
    Incidence Of Disease Increases With Distance From Equator.

    A chronic, often disabling disease hits more people in New Hampshire than nearly any other state, health officials said.

    Joyce Nelson of the National Multiple Sclerosis Society said that the state has one of the highest rates of multiple sclerosis in the country, with 3,000 cases.

    There is no cure for the autoimmune disease and no known exact cause, but experts said they believe a combination of factors seems to be responsible. One possible factor for the number of cases in the Granite State may have to do with its location.

    "We have found that the incidence of MS increases the further that we get from the equator," Nelson said.

    The disease also strikes twice as many women as men. It can cause a wide range of symptoms and severity in patients, including loss of mobility.

    Source: WMUR 9 New Hampshire Copyright 2007 by WMUR. All rights reserved (02/02/07)

    More People With MS In UK
    Overall, the frequency of MS in the UK is on the increase. In 1985, the prevalence in Wales was 117 per 100,000. In 1988 it was 120 per 100,000.

    In Scotland, there is 137 per cent more MS than in England and Wales. MS is more prevalent in northern Great Britain and northern Ireland than in England and Wales.

    However, this increase is not necessarily due to more people actually getting MS. The figures can be explained by:

    • a steady reduction in mortality from MS.
    • changes in definition, classification, and laboratory methods of diagnosis.

    Ref: Epidemiology And Current Treatment of Multiple Sclerosis in Europe Today, Journal of Rehabilitation Research and Development, Vol. 39 No. 2, March/April 2002. Pages 175–186Jul 3, 2002. Carlo Pozzilli, MD, PhD; Silvia Romano, MD; Stefania Cannoni, MD Department of Neurological Science, University of Rome, “La Sapienza,” Italy. (05/06/04)

    © Multiple Sclerosis Resource Centre (MSRC)

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