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    You are here : Home » About MS » Paediatric Multiple Sclerosis » Paediatric Multiple Sclerosis News

    Paediatric Multiple Sclerosis News

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    Amy IronmongerPaediatric MS Information

    Although thought to be relatively uncommon, it is fast becoming clear that there is a gathering number of children and teenagers being diagnosed with Multiple Sclerosis around the world.

    We hope to bring you as much information as possible with regards Paediatric MS.

    If you are the parent of a child who has been diagnosed with MS, or a child/teen with MS we would like to hear from you.

    Neurologists begin to build consensus on managing pediatric MS and similar disorders

    MS DiagnosisThe process of building consensus on the medical management of pediatric MS and similar disorders has begun, thanks to a systematic survey conducted by the Network of Pediatric MS Centers of Excellence established by the National MS Society.

    The recently published results (Journal of Child Neurology 2011;26(6):675-82), by Amy T. Waldman, MD (Children’s Hospital of Philadelphia) and colleagues, identified and agreed on some specific treatment approaches, and also identified areas that need further research.

    The Society is supporting a data coordination and analysis center so that important research on pediatric MS can continue to bring needed answers to these and other questions.

    Background: Although multiple sclerosis occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,000-10,000 children (defined as up to 18 years old) in the United States have multiple sclerosis, and another 10,000-15,000 have experienced at least one symptom suggestive of MS.

    Because of the critical need to better understand pediatric MS, through its recently completed Promise:2010 initiative, the National MS Society established a network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehensive services through multidisciplinary teams including pediatric and adult MS experts. The centers are working together to: improve evaluation and management strategies to enhance diagnosis and care of children with MS and other related disorders; develop resources for families, health care professionals and the public; and collect data that will enable large scale research initiatives.

    The Study: The authors invited 67physicians associated with the network (or others identified for their expertise in MS and similar diseases) to participate; 42 accepted. They used the Delphi technique, which involved sending out a series of questionnaires that are answered anonymously and then analyzed. Technical support for this effort was provided by the National MS Society.

    Consensus – defined as agreement by more than 75% of the respondents – was reached on several items, including the following:
    • The initial evaluation of a child or teenager should involve magnetic resonance imaging scans of the brain and several blood tests (complete blood count, erythrocyte sedimentation rate, basic metabolic panel).
    • Acute attacks of the brain or spinal cord do not always require treatment; the decision depends on the symptoms of the attack, the severity, and the timing relative to the medical evaluation, among other factors.
    • Intravenous methylprednisolone is the first-line treatment of choice for acute attacks of MS in children, and similar disorders such as neuromyelitis optica.
    • Respondents would stop or change disease-modifying therapy if relapses increase or if side effects occur that interfere with daily activities.

    For some items, a majority opinion was formed (50% to 75% of respondents). For example, a majority supported the use of disease-modifying therapies in children diagnosed with MS or considered at high risk for the disease.

    Other areas were not agreed upon, reflecting a need for further research:
    • There was lack of agreement on the optimal choice of second-line treatments for acute attacks.
    • There was a lack of agreement on the frequency of MRI scans when monitoring pediatric patients with MS and similar disorders.
    • A consensus was not reached on whether to use disease-modifying therapies in children under the age of 5.

    This consensus report does identify important areas for further study, such as what to do when first-line treatment fails in kids with MS, and how to treat very young children. The initial grants to the Pediatric Network Centers of Excellence have been extended for an additional year to continue funding the comprehensive care centers and there is funding for the next two years to support a data coordination and analysis center so the network can continue to collect data and study pediatric MS and related disorders. The network also is planning to expand its collaboration to include other sites around the country that are interested in gathering data on these diseases.

    Source: US National Multiple Sclerosis Society (22/06/11)

    Children diagnosed with MS on rise

    MS DiagnosisWednesday was World Multiple Sclerosis Day, and two local families spoke out about how the disease has affected them.

    MS is usually diagnosed in people between the ages 20 and 50 years old, but some doctors are becoming concerned that more cases of young people are popping up in Kern County.

    "Medical experts used to think that children didn't get MS, but now many are being diagnosed. This helps raise awareness for pediatricians to look out for the disease," said Kim Kotrla of the National MS Society.

    There are just under 1,000 MS cases in Kern County and 5 percent of those are in children. Two Bakersfield moms are speaking out about their daughters’ recent diagnoses.

    "Now we are seeing more kids with this disease. We need more people digging in and looking into why this is happening," said Shelly Gilliland, whose 12-year-old daughter, Taylor Prather, was recently diagnosed.

    Joy Amaro's 14-year-old daughter Durer, was also recently diagnosed with MS.

    Amaro said their medical specialist in San Francisco was shocked to hear that they were from Kern County, because they have had an increasing number of patients from this area.

    "That makes me think what's going on here in Kern County, it's worrisome," said Amaro.

    Multiple sclerosis is a progressive, debilitating disease. MS is an unpredictable disease of the nervous system that disrupts communication between the brain and other parts of the body.

    "I have aches and pains in my legs, arms and my head. It affects my daily activities, activities," said Taylor.

    "It's harder than people thing it is, I know it's not as bad as cancer, but I have to deal with it for the rest of my life," said Durer.

    The disease affects the whole family’s daily routine and makes parents feel helpless.

    "Seeing your child go through the pains of MS, staying up with them at night holding their hands, trying to get them to sleep because they are in so much discomfort, it's challenging," said Amaro.

    Taylor's passion was to participate in dance competitions, but since the diagnoses, her body was in too much pain to continue.

    "You always have to keep a positive attitude and remember no matter what you are going through, it will work out," said Taylor.

    Amaro was a typical teenager with normal activities, like bike and skateboard riding, but she hasn't used those since the pain has gotten worse.

    Her medication has caused a 50 pound weight gain and she hasn't seen her school friends since the diagnosis. She has been home-schooled since then.

    "I am kind of self conscious seeing my friends, because they don't know anything about what I have been going through. Maybe when they see it on the news, they will know," said Amaro.

    Taylor and Durer haven't met yet, but they have been in commutation with each other through text messaging. Medical experts say, it's important for anyone with the disease for have a support group.

    Both families say their faith in God has carried them through the tough times and pray that a cure can be found during their lifetimes.

    About 400,000 Americans have MS. The symptoms may mysteriously occur and then disappear. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. Still, MS symptoms can hurt quality of life.

    The whole idea behind World MS Day is the opportunity to raise awareness about the disease and to strengthen the network of people living with MS across the world.

    Source: Kero23 © 2011, McGraw-Hill Broadcasting Company (27/05/11)

    Meeting of the international pediatric MS study group

    MS DiagnosisThe annual meeting of the Steering Committee of the International Pediatric MS Study Group (IPMSSG) was held in London, UK on the 25-26 September.

    The meeting was co-hosted by MSIF, the US National MS Society and the MS Society of Canada.

    The IPMSSG is a global network of neurologists, scientists, clinicians, and representatives of MS societies, whose unifying vision is to optimise worldwide healthcare, education and research in pediatric multiple sclerosis and other acquired inflammatory demyelinating disorders of the central nervous system.

    MSIF and the MS societies of Canada, Italy and USA play a key role in coordinating and facilitating activities of the Study Group.

    The main goal of the meeting was to develop a global consensus statement regarding the current knowledge about treatments in pediatric MS and recommendations for future studies and clinical trials in new and existing therapies. This statement would inform and guide clinicians, pharmaceutical companies and regulatory agencies, such as the Food and Drug Administration of the USA and the European Medicines Agency (EMA).

    The timeliness and importance of this meeting should be seen in the context of the urgent need for more research about efficacy and safety of treatments in pediatric MS and the new requirement by the EMA that all pharmaceutical companies submitting applications for drug approvals in adults must also present plans for how these drugs will be evaluated in children.

    While the EMA prefers clinical trials that prove efficacy and demonstrate safety, exceptions can be made for drugs that raise specific concerns for use in children. With the emergence of several new drugs for MS in the pipeline, and the lack of a large enough pediatric MS population worldwide to participate in all the studies, careful planning is required to ensure safety and efficacy of studies while avoiding delay of approval of new drugs that could greatly benefit children and adolescents with MS.

    The IPMSSG is uniquely situated to provide independent, expert opinion on best practice with regard to the use of new and existing treatments and to advise on the feasibility and advisability of efficacy and/or safety studies for the full range of new drugs in the MS pipeline.

    The consensus statement is expected to be available before the end of 2010.

    Source: MSIF (06/10/10)

    Pediatric Multiple Sclerosis and Related Disorders Program

    Children's Hospital Boston pediatric neurologist Mark Gorman, MD, has developed the Pediatric Multiple Sclerosis and Related Disorders Program to care for children and teens with multiple sclerosis (MS), acute disseminated encephalomyelitis (ADEM), optic neuritis and transverse myelitis. The program's team includes a nurse, pediatric neuropsychologist, educational liaison, child psychiatrist, social worker and family advocate.

    Traditionally an "adult" disease, pediatricians may not expect to see young patients with MS. However, it is becoming increasingly diagnosed in children and teens, with up to 10 percent of patients with MS first developing symptoms before age 18. Symptoms present in a relapsing-remitting fashion and include:

    • vision loss or double vision

    • weakness

    • numbness or tingling

    • clumsiness and difficulty walking

    • declining school performance

    Pediatricians with patients presenting with such symptoms can refer for further evaluation. Children's specialists conduct a neurologic exam, brain and spine MRIs and a lumbar puncture to determine the diagnosis. Through a close follow-up process, Dr. Gorman and his team pay special attention to distinguishing one-time events, such as ADEM, from recurrent disorders, such as MS. If MS is diagnosed, prophylactic treatment, such as interferons, is offered to reduce relapses and improve the long-term prognosis. If patients do not respond, there are several second- and third-line agents available. If relapses occur, outpatient infusions of corticosteroids are available to avoid unnecessary hospitalizations. Patients with MS and related disorders receive comprehensive care, including a neuropsychology assessment to identify potential learning disabilities and guidance in formulating education plans.

    Because MS is a chronic disease requiring ongoing care through adulthood, Children's program helps patients transition to adult specialists.

    Make a referral: 617-355-2758

    More information: childrenshospital.org/ms

    Little Lucy’s big battle with multiple sclerosis

    Lucy Wood

    Brave Lucy Wood’s smiles hide a secret sorrow . . . that she’s one of the world’s youngest children to fight multiple sclerosis.

    The happy five-year-old should be concentrating on dressing her dolls and giggling at her Disney film favourites.

    Instead, last summer her family’s world was shattered when doctors in Newcastle gave them the shock diagnosis they may never recover from.

    It is a tragic twist for the Wood clan, from Peterlee, County Durham.

    For Lucy’s dad Stuart was told by doctors at the age of 27 that he would have to fight MS.

    And after Lucy began suffering terrifying bouts of blindness, vomiting and walking difficulties, Stuart and Lucy’s mum, Sharon, feared the worst.

    Sharon took Lucy to an optician who explained there was pressure building at the back of her left eye and referred them to Sunderland Royal Hospital.

    She was switched to Newcastle General Infirmary, the children’s specialist centre for the North East, where she was put under a general anaesthetic while doctors carried out a lumbar puncture, blood tests and a brain scan.

    That was last summer and a time the family will never forget.

    For their “beautiful little girl” was told she had the incurable condition of the central nervous system.

    “Hearing the diagnosis was like being in a car accident,” said Sharon, 39.

    “We already had a good idea of what was wrong with Lucy, but having it confirmed was horrific.

    “It was her birthday party and Lucy lay down on the kitchen floor exhausted, but then couldn’t get up.

    “When she began vomiting, I put her to bed hoping it was a tummy bug. But two days later, Lucy started dragging her left leg, just as her father had done before he was diagnosed.

    “I felt sick. This time her neurologist confirmed MS. We were inconsolable. It just seemed so cruel.

    “She is such a brave girl, she never complains.”

    When the diagnosis was confirmed, Stuart was distraught and blamed himself.

    During her bad days, Lucy suffers from slurred speech and blurred sight, and has to use a buggy when she goes on trips out.

    In between she is like any normal child, apart from tiring easily and occasionally dragging her left leg.

    There is little research into children’s MS, and no way of knowing what the future holds for Lucy.

    However, experts believe she will experience significant neurological deterioration before her 21st birthday.

    Stuart, 40, said: “I know it isn’t my fault. But that hasn’t stopped the guilt. I am the one who has passed this disease on to our beautiful little girl.”

    Sharon is trying to stay positive and has given permission for Lucy to star in a national advertising campaign for the MS Society aimed at raising awareness of the condition in children.

    “Who knows what the future may hold,” said housewife Sharon.

    “There could easily be a new drug or even a cure for MS.

    “We have been unlucky. But we are a strong and loving family. We have a lot to be thankful for.”

    The North East has already had its share of heartbreaking stories on childhood MS.

    In 2007, Gateshead teenager Patsy Peebles was told she had the condition at the age of 14.

    She has gone on to be an award-winning campaigner in raising the profile of teenagers battling with the disease.

    Source: Sunday Sun © 2009 owned by or licensed to ncjMedia Limited. (03/06/09)

    Raising awareness of Paediatric Multiple Sclerosis in the UK

    Amy Ironmonger

    Hundreds of children in the UK could be experiencing early symptoms of multiple sclerosis but are going undiagnosed because of lack of awareness.

    The majority of people believe MS – which affects more than 10,500 individuals in Scotland – only strikes in older age groups. But it is estimated that up to 10 per cent of people could have had their first symptoms of the debilitating condition under the age of 16 – and children as young as 13 months have been known to experience MS symptoms.

    It is thought that earlier diagnosis and treatment could help slow down the progression of the disease.

    It is hoped to raise awareness of the condition in children and teenagers as part of MS week, which starts today, challenging the assumption that it is a condition which only affects older people.

    Dr Doug Brown, research manager at the MS Society, said that without raising awareness, it was difficult to know exactly how many cases of MS began in childhood. "There are estimates that around 10 per cent of adults who have MS could have their first MS episode in childhood," he said.

    "Because of the lack of awareness that children can develop MS, there is a lack of awareness among professionals who don't think of MS if a child is diagnosed with particular symptoms. We hope to raise this awareness."

    Dr Brown said that around 250 children a year were estimated to suffer a demyelinating episode – a first symptom of MS where the substance myelin is lost from nerve fibres.

    A new study, funded with £400,000 from the MS Society and Action Medical Research, has recently been launched in the UK to try to discover the extent of MS in children.

    Symptoms can include problems with memory, concentration and movement. Not all those who experience demyelination will go on to develop MS, but the new study will try to find out how many children do.

    Dr Brown said symptoms in children tended to be less severe than in adults, which could add to the confusion at diagnosis.

    "It is a difficult time for children because they are at school, they could be in their adolescent years. There's a lot going on and it is really quite tricky.

    "If a diagnosis and symptoms of MS come along, then it can really be quite devastating for the children and their families. They may not have even heard of MS before and don't know how to cope with MS in a child.

    "To have a child experiencing symptoms of MS, such as extreme fatigue and sight loss, that is quite worrying."

    A new advertising campaign by the MS Society has been launched to combat some of the myths about the condition, including the assumption that it does not affect children.

    Dr Brown also said that in school, a child suffering fatigue caused by MS could simply be labelled lazy. "So much happens in childhood that parents and children may just think that's normal and may not seek medical advice for it," he said.

    "We have to identify these children and raise awareness among the public and the medical profession.

    "There is an argument that the earlier you start treatment, with the current therapies, the slower the MS will progress."

    Dr Evangeline Wassmer, who is leading the research, said: "The study will create a group of paediatric MS cases that can be followed during the course of the project and beyond into adulthood, providing the basis for a valuable long-term study."

    'I thought MS was something that affected older people'

    Amy Ironmonger has just started her dream job, looking after children on their holidays abroad.

    But when she was diagnosed with multiple sclerosis, she never thought she would be able to follow her ideal career.

    Amy, now 19, was diagnosed just after her 18th birthday, following a series of tests which started when she was 17.

    "I was told I had a lot of scar tissue on my brain so I had had it for a while, but just never went to the doctors about anything," she said.

    With hindsight, Amy can see the symptoms of clumsiness in her childhood which were likely to be due to the early stages of MS.

    But she was finally diagnosed after having a fall in the bath.

    "I fell and banged my arm and my head and then when I got out of the bath I fell down the stairs," she said.

    "I was sitting at work the next day and I was sitting at my computer and I noticed that it was a bit blurry. I tried moving it and it did not work. I saw an optician and they recommended I see a doctor."

    Eventually a CT scan showed up inflammation on her brain and an MRI scan confirmed it as MS.

    "I did not have a clue what MS was when I was told about it. All I thought was that it was probably something that affected older people and I was young."

    Amy has gone on to try various treatments for her condition, but is now taking a break from them while she works in Portugal as a children's rep.

    Source: News.Scotsman.com  ©2009 Johnston Press Digital Publishing (27/04/09)

    Billy Talent Drummer Acts As Driving Force Behind MS Scholarship Program, Canada
    The Multiple Sclerosis Society of Canada announced that for the second year in a row, scholarship applications are now available for youth directly impacted by MS. The drummer of one of Canada's hottest punk rock bands, Billy Talent, is the driving force behind the program.

    The MS Society of Canada Scholarship Program, supported by Billy Talent and Friends, is accepting applications from Canadians under the age of 25, who have MS or a parent with MS, for funding toward 2008/09 post-secondary studies.

    Last year, Aaron Solowoniuk, of Juno Award-winning Canadian punk rock band Billy Talent, publicly announced that he has lived with MS for close to a decade. He worked with the MS Society on ways to raise funds and awareness among teens and young adults directly affected by MS, resulting in the creation of the scholarship program.

    "To say I'm happy with the results of the first year of the scholarship program would be a huge understatement," says Solowoniuk. "The progress we've made is really amazing. I'm very excited to be a part of something so special and I'm looking forward to helping as many teens and young adults as we can in the upcoming 2008/09 school year."

    Aaron Solowoniuk and Billy Talent have been involved in a number of fundraising initiatives in support of the MS Society of Canada Scholarship Program, including a sold-out concert in Toronto this past December. Last year, the MS Society was able to distribute $60,000 in scholarships.

    Details on scholarship criteria and application forms for scholarship funding are available for download at http://www.mssociety.ca/en/help/scholarship.htm. Applications must be postmarked by April 15, 2008. 

    Source: Multiple Sclerosis Society of Canada (08/02/08)

    Patsy Peebles - My Life With Multiple Sclerosis

    Patsy Peebles, is a 15 year old with MS from the North East of England. She now has an online blog about her journey with MS.

    You can read it at http://purelypatsy.chroniclelive.co.uk/2008/01/hello.html and is a fascinating insight into how a teen with MS copes with everyday life etc.

    Young Persons with MS: A Network for Families with a Child or Teen with MS

    The National Multiple Sclerosis Society and the Multiple Sclerosis Society of Canada have come together to offer “Young Persons with MS: A Network for Families with a Child or Teen with MS.” in North America.

    The network provides families living with a child or teen that has been diagnosed with MS the opportunity to connect with other families by offering multiple program options. The network targets two distinct populations:

    Children with MS (18 or younger) residing in the home of their parents or guardian. Parents of a child or teen with MS

    The network provides a variety of programs to meet the needs of these families.

    Education:
    The network provides educational programs and written materials for children and their parents about childhood MS. One way to get involved is to participate in the quarterly teleconferences offered to parents.

    Information and Referral:
    Parents can contact their local chapter to learn more about MS and resources available to them. To learn more about the network or to get information more specific to childhood MS, parents may use the toll free number.

    Emotional Support:
    Families can gain emotional support through the different programs offered by the network as well as local support groups offered by the chapter.

    Connecting Families:
    Through the network, parents can join an email group where they can share with other parents their concerns and information as well as develop a support network.

    For more information or to register for the Network for Families, please call
    1-866-KIDS W MS (1-866-543-7967)
    or Email: [email protected]

    How Multiple Sclerosis Affects Children
    What happens when children are diagnosed with multiple sclerosis?

    Debbie Andalo on the work being done to help them cope with a disease largely thought to affect only adults

    Karen Pumpuni could be any ordinary teenager enjoying her half-term break. In her skinny jeans and T-shirt she crouches over her computer, breakfast on her lap, finishing off her AS-level English coursework. Only the wheelchair folded away in the corner of her home in Streatham, south London, gives a clue that her life is far less ordinary than that of other 16-year-olds. For the last two years Karen and her family have been coming to terms with her diagnosis of the neurological disease multiple sclerosis, which has only recently been acknowledged by the medical profession as a condition that affects children.

    Karen is one of around five per cent of the 100,000 people in the UK with MS who are children. The chronic condition, traditionally associated with adults, affects the central nervous system creating symptoms of fatigue, loss of mobility and eyesight, and can result in long-term disability. It took doctors four years to diagnose Karen's condition, which came as a shock to her mother Eunice but also a relief.

    She says: "I felt relief that Karen had been given a diagnosis. I had hoped that she would be diagnosed with something that would be instantly curable. At the same time I thought that the doctors might have made a mistake because I had never hard of children getting MS before and when I went home and looked on the internet there was nothing I could find out about it."

    Karen was completely in the dark about the disease, which affects twice as many women as men. "I had heard about MS but I didn't know the symptoms like you would if it was cancer," she said. "I didn't know if it was something severe or something which could be easily treated like asthma." Two years on from her diagnosis she still feels isolated by the disease. She admits: "I feel like nobody understands what I go through."

    This week the charity the MS Society is hoping that its first ever conference on childhood MS, held on Wednesday (November 7) in London, will go someway to help raise the public and health profession's understanding of the life that Karen and other young people like her face. The charity hopes that the conference will be the first step in the UK towards recognition of the condition in children, taking the lead from US and Canada.

    The conference will aim to decide best practice for children with MS in the UK and look to where services need to be developed. At the moment the UK has only one dedicated centre for children with MS at the Birmingham children's hospital, and even there, no specialist MS nurses are trained to work with children.

    Dr Evangeline Wassmer, the paediatric neurologist who heads the unit, says: "A lot of children with MS get seen by adult neurological services or get some shared care with paediatrics. It's a big issue – they are children and they need to be communicated with as children, it's not just a question of talking to their parents."

    Dr Wassmer wants more dedicated MS children's centres and national prescribing guidelines changed so that the disease modifying drugs available for MS can routinely be given to children without prior approval of their primary care trust.

    She is also keen to establish a longitudinal study of MS in children so that the disease can be tracked from a young age to adulthood. "At the moment we don't have that data, we don't know what happens to the disease if its onset is in childhood."

    Dr Anita Rose is a specialist clinical psychologist for people with MS at the Walton centre of neurology and neurosurgery in Liverpool. While the centre is for adults with MS, she takes some child referrals and gives advice and support to health care professionals and families of young people with MS. She wants the UK to follow the US model and establish summer camps for children with MS as one way of breaking down their isolation. Social networking websites and YouTube could also be used, she suggests, to put young people in contact with each other.

    She says: "It's a very isolating diagnosis. Children are very often scared, they get angry and depressed. They may know it's not a terminal condition, in fact the first question they ask is 'Am I going to die?' But they realise they may become disabled, that it's a life-long condition and they could be in a wheelchair by the age of 25."

    This September the MS Society committed itself to dedicating "a year of youth", provisionally for 2009. This will highlight the issue of childhood MS, what it means for children and their families, as well as those young people who care for an adult parent with MS.

    Details of the initiative are likely to be raised at Wednesday's conference, says Jayne Spink, the charity's director of policy and research. She says: "At the moment the charity doesn't provide anything for children or young adults with MS in terms of articles or information, because it's only recently that we have become aware of the whole issue."

    She is hopeful that following the conference some of those gaps, and others, will be identified and filled. "We want to look at the best way of providing care and expertise. We want to find out what is being done for children, what we need to do and how we can bring that forward."

    Source: Guardian Unlimited (05/11/07)

    Children and Multiple Sclerosis - Surprising Diagnosis

    Multiple Sclerosis Was Thought To Begin In Adulthood, But Doctors Are Now Recognising Its Symptoms In Children.

    Ciara Rivera, 17, of Wethersfield, left, has multiple sclerosis, rare in a young person. A year ago she was paralysed and unable to speak, but she is now in a period of recovery. Her mother, Sandra Collazo, right, is her friend, her rock and her advocate. "We don't take anything for granted anymore," Collazo says.

    Roseanne Bonevich's doctor suspected a brain tumor when, as a high school freshman, Roseanne complained of blurred vision, dizziness, forgetfulness and rubbery legs.

    Kyleigh Hinson was 10 when her double vision got so bad that the star soccer player sometimes couldn't figure out which of the two balls she saw on the field was real. Her doctors thought it was a short-lived virus.

    Ciara Rivera's doctors said the sharp flashes of pain that shot through her body like electric shocks were all in her head. They suggested that Ciara, then 15, see a psychiatrist.

    The doctors all said the same thing: The girls were too young to have multiple sclerosis.

    And the doctors were all wrong.

    The girls - Roseanne from Pennsylvania, Kyleigh from Texas and Ciara from Connecticut - have all been diagnosed since with multiple sclerosis. It is a degenerative disease that can cause a confusing array of symptoms that can range from annoying to crippling when the immune system runs amok and attacks nerve cells in the brain and spinal column.

    "They said they were sorry after she was diagnosed," says Ciara's mother, Sandra Collazo, of Wethersfield.

    It has long been believed that MS strikes people when they reach their 20s and 30s. But with greater understanding and new diagnostic techniques, doctors are increasingly recognising that the disease can start in childhood.

    The youngest child to be diagnosed with the disease was 18 months old, although it is found more commonly in early adolescents and teenagers. Of the estimated 400,000 people in the United States with MS, scientists now think 8,000 to 10,000 got the disease when they were under 18.

    "Most people are unaware, and paediatricians are surprised to hear that kids can get MS," said Dr. Lauren Krupp, director of the National Pediatric MS Center at the State University of New York at Stony Brook on Long Island.

    It is important for doctors to know because medications approved for use in adults can slow the progression of the disease in children, especially when MS is diagnosed early, Krupp said.

    While much about MS remains mysterious, a new report published in the New England Journal of Medicine last month sheds some valuable new light on the course of the disease in children.

    The study looked at 394 adults in France and Belgium whose MS symptoms began when they were 16 or younger.

    Among a long list of findings, the study concluded that children are more likely to have a relapsing and remitting form of the disease characterised by flare-ups followed by complete recovery. Many adults have a more devastating form of the disease known as chronic progressive MS.

    So far, Ciara Rivera appears to be among the unlucky few with a rapidly progressing form of the disease. Since her MS symptoms began two years ago, she has spent weeks at a time in the hospital. At times, the disease has caused seizures, trouble swallowing, blindness, paralysis, depression  and incontinence.

    At one point last winter "she lost all of her abilities," Ciara's mother said. Photographs from that time show a listless girl in a hospital bed, her pretty face swollen and distorted from high doses of anti-inflammatory steroids. She couldn't walk, eat or see, her mother recalled.

    When it became clear that standard MS drugs - Avonex, Copaxone and Betaseron - failed to stop the devastation, Ciara's neurologists at Connecticut Children's Medical Center decided to try to turn off her renegade immune system with Cytoxin, a chemotherapy sometimes used to fight cancer.

    Dr. Carol Leicher, medical director of the neurology department at Connecticut Children's, said it seems like the number of children being diagnosed with MS has gone up in recent years, although she has no figures to support her hunch. Leicher estimated that five to 10 children are now being treated for MS at the Hartford-based children's hospital.

    Leicher, one of the neurologists who finally determined that Ciara indeed has MS, said the disease is so rare that other doctors involved in her care should not be faulted for ruling out less serious conditions first.

    She said doctors at first had hoped that Ciara was suffering from a one-time inflammation of the central nervous system that can result from a bad reaction to certain childhood viruses or vaccinations.

    The symptoms of the short-lived syndrome, known as ADEM, can be very similar to those of MS and doctors often wait until children have multiple bouts or long-lasting symptoms before they begin to suspect MS.

    "It's not that people are ignoring the symptoms," Leicher said. "It's that if you make the diagnosis of MS there are significant long-term implications for treatment."

    Kyleigh Hinson's doctor initially said she had ADEM, too. It was only after an MRI showed scar tissue on her brain that her doctors in Dallas considered MS. "They didn't know what to do with me," said Kyleigh, who was in Exeter, R.I., this month at a camp for children with MS. "They didn't think kids got MS, and here I am."

    Now 18, Kyleigh's most troubling symptom is fatigue. She takes Adderall, a stimulant usually used to treat attention deficit/hyperactivity disorder, just to get out of bed in the morning. But she's going to college on a full soccer scholarship and said she does not expect MS to get in the way of her plan to become a pharmaceutical representative.

    Roseanne Bonevich, 18, also is headed to college, despite memory problems that she says require her to wake up at 4 a.m. to study on the day of a test. She wears a brace on one foot and takes high doses of a drug used to keep fighter pilots alert on long missions just to fight her MS-related fatigue.

    After suffering major relapses every three to four weeks over the winter, Ciara's life has begun to return to normal.

    She is walking so well that the wheelchair parked in her bedroom is buried deep under a pile of clothing. Her walker is folded behind the door.

    With medication for depression, Ciara is upbeat about her future. She wants to return to A.I. Prince Technical High School in the fall and eventually go to college in Florida to become a marine biologist.

    Her mother has a more distant goal - to help scientists find a cure for MS. Sandra Collazo passes the hours when her daughter is in the hospital making beaded bracelets that read: "Help Fight MS." She sells them to raise money for research. She's planning several other fundraising projects as well.

    And she wants to raise public awareness about the disease. Collazo gets angry when she thinks about her daughter's long wait for a diagnosis. And she has little patience for people who are not aware of how unpredictable MS can be.

    She finds it hard to be understanding when people ask her how it's possible that Ciara can be walking around the mall one day - and sick in a hospital bed the next.

    "We want people to know that MS does hurt," Collazo said. "And it does change your life."

    Source: The Hartford Courant Copyright © 2007, The Hartford Courant (16/07/07)

    Landmark papers on paediatric Multiple Sclerosis research and care
    'Pediatric Multiple Sclerosis and Related Disorders' has just been published by the International Pediatric MS Study Group as a supplement to the journal Neurology. The Group was founded by the National MS Society (USA) to foster global cooperation in studying and addressing the challenges associated with what is generally thought of as an adult neurological disease when it occurs in a non-adult population.

    It is estimated that there are at least 8,000 – 10,000 children who have MS and another 10,000-15,000 who have experienced what may be symptoms of MS.

    The compendium that offers nine peer-reviewed papers describes the current state of clinical care, research and knowledge related to paediatric MS and lays out research and clinical directions for the future. Until recently, there was little attention or understanding about the occurrence of MS in children and its management.

    The compendium of papers (Neurology 2007; 68 {Suppl 2}- http://www.neurology.org/content/vol68/16_suppl_2/#PREFACE) includes the first proposed consensus definitions for paediatric MS and related disorders. It also reviews published research on topics such as the use of MRI brain scans in diagnosis, and the psychosocial impacts of MS including issues related to school, social milestones and family life.

    In adults, MS can cause variable symptoms including fatigue, tingling sensations, and movement, vision and memory problems that can come and go or worsen. In children, these and other symptoms can have profound effects on schoolwork, relationships with peers and family dynamics – especially if the disease goes undiagnosed.

    "Traditionally, paediatricians and neurologists have largely overlooked MS as a possible diagnosis in children, and caring for these children holds distinct challenges," stated Deborah Hertz, MPH, Associate Vice President of Medical Programs at the National MS Society, who co-edited the supplement. "These global efforts to standardise how we diagnose, treat and gather data on children with MS will ultimately enable us to tackle big research questions, such as what factors trigger MS," she added.

    The National MS Society established the International Pediatric MS Study Group to enhance understanding of the care of children and adolescents with paediatric MS and to foster international collaborative research. Subsequent to the development of this supplement, the study group has expanded to include investigators in more than 10 countries and with additional sponsorship from the MS Societies of Canada and Italy and the MS International Federation. An adjunct to these international efforts to better address the needs of children with MS and their families is the Society's recent establishment of six U.S. Paediatric MS Centers of Excellence, where children with multiple sclerosis and related disorders can go for proper diagnosis and care, including support social services, family programs and information for teachers (www.nationalmssociety.org/PediatricMS)  - National Multiple Sclerosis Society.

    Source: National Multiple Sclerosis Society

    Hempfield teen grapples with multiple sclerosis
    When high school student Ashley Contino didn't feel well last year, her mother at first assumed the culprit was the common cold or maybe even the flu.

    "I didn't really know what was wrong, but I would come home from school and be really tired. I didn't know what it was," said 16-year-old Ashley, of Hempfield Township. "Whenever I would tell someone about it, they said I was working too hard, my schedule is too busy, and that I should cut back."

    But in May, when the school nurse called Tina Contino to pick up her daughter from classes at Hempfield Area High school, they both knew the symptoms had to mean more than an overactive lifestyle.

    Ashley's severe fatigue, headaches, light-headedness and numbness in her face and arm led the family to the emergency room, where a CT scan revealed a blemish on the teen's brain.

    "The doctor said it could have been anything from an aneurysm to just how she was born," Ashley's mother said.

    Dr. Michael Sauter, of Westmoreland Neurology in Greensburg, called the next day to request additional testing. That added a new level of worry for Tina Contino, her husband, Bob, and their older daughter, Amber, 18.

    "Ashley's MRI showed an increased amount of abnormal signals or lesions on the brain, which suggested multiple sclerosis," Sauter said. "But we had to make sure that she did not have any other disease processes that mimic MS. Lyme disease was ruled out, as was mononucleosis."

    A spinal tap, or lumbar puncture, provided the last piece in the puzzle. After examining a sample of fluid from her spinal column, Sauter concluded that Ashley indeed has MS, an autoimmune disease of the central nervous system -- the brain, spinal cord and optic nerves.

    It's a chronic illness, and although medication may slow its progress, there currently is no cure.

    "You thank God for healthy kids all the time, but then you get blind-sided with news like this," Tina Contino said. "Here we are thinking it's mono or a virus, and then to do the test to find out it's this serious, we were crushed. It broke our hearts."

    The nerve cells in the brain and spinal cord are connected by long fibres wrapped in layers of a lipoprotein, or fat, known as myelin. The myelin sheath acts like the insulation on an electrical cord, shielding nerve impulses as they are conducted along the nerve fibre.

    Sometimes, for reasons unknown, the body's immune system attacks the myelin sheath and damages the nerve fibres beneath it. This scarring, or "sclerosis," disrupts the nervous system and results in the symptoms of MS, which vary depending on where the damage occurs.

    Some patients have sensory issues, such as numbness, dizziness or trouble with vision. Others have motor symptoms such as tremors or difficulty walking. Still others suffer neurological problems, including mood swings or depression.

    The symptoms can be temporary, recurring or permanent. Although some people become increasingly disabled, two-thirds remain able to walk and most MS patients have a normal life span.

    Ashley, the youngest patient Dr. Sauter ever has diagnosed with MS, has recurring symptoms that are controlled by medication. She has been able to maintain her lifestyle, but with some modifications to help alleviate her symptoms.

    "I get sick from the heat, so I have a cooling vest to keep me cool," said Ashley, who also pays special attention to her level of fatigue during activities.

    Now a 10th-grader, she has remained active in volleyball and continues to take dance classes.

    "There's a way around anything that you want to do," she said.

    Ashley's positive attitude is a major factor in how well she'll be able to cope with her illness, Sauter said.

    "First and foremost, we have to tell the patients that this is not necessarily an abbreviation in their life," he explained. "The change that may happen is in the quality of life. And part of that quality of life is determined by how proactive or active you stay.

    "It's all the difference in the world," Sauter added. "It's what I tell everyone with a chronic neurological disease: Those who remain active do better. Ashley is a shining example of how someone with a neuro disease has remained functional. The worst thing you can do is to tell them to sit on the sidelines and not live their life as planned. "

    Because there is no cure for MS, Ashley settles for medications that help to control her symptoms, which include double vision and blurriness, headaches and fatigue.

    She injects her own medication, saying she doesn't want her uneasiness about needles to lead to anger with someone else. She'd rather do it herself -- and she is adamant about raising awareness about MS.

    "She even spoke at a Women Against MS benefit in Pittsburgh. She just got up there and told her story," her mother said. "It breaks my heart to hear her say it, but on the other hand, she's taking charge and not letting it get her down."

    Ashley said it especially important for her to speak out, because researchers need to learn more about MS and how it affects people her age. Most MS patients are diagnosed as young adults in their 20s, 30s or 40s.

    "I just want people to know what it is like for a child to go through this. I just want them to know what I went through and to share my story," Ashley said.

    "Most people are surprised that someone my age can have this. I believe that as some point they'll find a cure for it. So it will help other people if they can do studies on me."

    To help raise funds for research, Ashley plans to take part the MS Walk planned for April 22 in Greensburg. She has formed a team called the Traveling Circus and so far has raised more than $2,500 for the National MS Society, which sponsors walks nationwide.

    Her school has been incredibly supportive, she said. More than 30 people, including some of her teachers, will be walking with her, and she is trying to recruit the entire high school football team to participate.

    "I am going to push for what I want. If it doesn't work out in the end, then it doesn't," Ashley said. "But I don't let it get me down at all.

    "I am still the same as everyone else. It's not something that is going to change me."

    Source: Pittsburgh Tribune Review copywrite Tribune-Review Publishing Co.

    Chat for Parents of children with Paediatric MS
    Coming soon to MS World in the US.

    Chat for parents of children with MS. Hosted by Dr. David Rintell from the Pediatric MS Center in Boston.

    Please keep an eye on MS World Headlines for further details.

    For kids, MS itself just half the battle
    Correctly diagnosing disease can be tricky; sometimes, so is talking about it.

    Tiffany Jones stood before her classmates at Hillcrest High School, trembling. It was time to present her anatomy class project--and reveal a secret she'd closely guarded.

    Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.

    The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is--Tiffany Jones."

    Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.

    "There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she continued, as the paper in her hand fluttered. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"

    Until recently, multiple sclerosis was considered an adult illness. The medical community largely overlooked children with MS symptoms--a type of neglect unfortunately common for chronically ill children, especially those with relatively uncommon nervous system disorders, medical experts say.

    But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable illness, which strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.

    Diagnosis usually after puberty

    As many as 10,000 U.S. children and teenagers--some as young as 5--have MS; another 10,000 to 15,000 have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.

    The youngest known patient with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are changing and flooded by hormones.

    Resources are scarce for these patients. With few exceptions, support groups are designed for adult MS patients. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients has been tested extensively in school-age youngsters or teens. And it's still common for paediatricians and family doctors to assume children can't get the disease, making misdiagnoses routine.

    "Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues--dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.

    "And paediatricians know how to treat kids, but they don't understand MS or know anything about the medications."

    Adding to the confusion, MS in youngsters is quite different than the disease in adults--so much so that researchers aren't certain if it's the same illness or a closely related variant.

    For instance, in adults MS overwhelmingly afflicts white people, but at younger ages far more African-Americans, Asians and Hispanics are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.

    The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy Kuntz, a paediatric MS specialist at the Mayo Clinic in Rochester, Minn.

    That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a paediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spatial perception.

    Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which afflicts children more often than it does adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.

    "Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the two conditions differ.

    Understanding the link between viruses and MS is one of the main goals of a new network of six paediatric MS centers established by the National MS Society late last year.

    Improving clinical care and support services for young people is another objective of the centers, whose Midwest location is the Mayo Clinic in Rochester, Minn.

    "The biggest single problem these kids have is they don't know anyone else like them," said Maria Milazzo, a paediatric nurse practitioner at the Stony Brook MS center.

    Learning to adjust

    Nicole Caron was so scared after being diagnosed with MS last year at 15 that she didn't tell any of her friends what was wrong--or even admit the truth of her illness to herself. A basketball and soccer player, Nicole first felt numbness in her fingers, then extreme fatigue. Within a few months, she began getting excruciating headaches, blurred vision and pain behind her left eye.

    The final diagnosis came after a brain scan and a spinal tap, but relief at knowing what was wrong was quickly followed by fear and denial.

    "I didn't want to believe anything was wrong," said Nicole, who lives in North Attleboro, Mass., and is being treated at Massachusetts General Hospital. "I thought if I kept it to myself it would be all right. And I knew everyone at school would gossip, and I didn't to be the center of attention."

    But the more Nicole concealed her worries, the lonelier she became. "I felt like a bad person because I wasn't telling anyone the truth," she said. After a month, she began letting friends know what was going on, but none of them had ever heard of MS.

    Twice a week, Nicole left school for doctors' appointments; once, a teacher commented in class on her excused absences. "I started to cry, I was so upset," said Nicole, who gives herself daily injections of the drug Copaxone to help stall the progress of MS. Several weeks later, she disclosed her illness to the teacher.

    For her mother, Judy Caron, the hardest part is accepting the unpredictability of MS, with symptoms that can come and go without warning.

    "As a parent, you always try to fix everything for your children, but with this disease you have absolutely no control," she said.

    In south suburban Country Club Hills, Carol Jones--Tiffany's mom--repeats a similar lament: "What's so scary about MS is, you can't tell what the future holds. You just don't know day to day what tomorrow is going to be."

    Coping, with help

    Tiffany's symptoms first surfaced in July 2005; after multiple visits with doctors and medical tests, a definitive diagnosis came a year later. In between, this slim dancer and pompom squad member with big, dark eyes couldn't understand why her arms and legs were going numb or why she suddenly would stumble or drop a cup.

    "It makes you feel so uncertain and so afraid," said the soft-spoken girl, who started thrice weekly injections of the drug Rebif in November.

    For support, Tiffany and her mom turned to a group of adults with MS who meet monthly in nearby Crete.

    "It's really helpful to know what other people go through," but many of the group members are in wheelchairs and "I was thinking one day that could be me," she said.

    At school, Tiffany told a few close friends about her illness early this fall but kept it concealed from other classmates and her teachers. She felt conflicted. She wanted people at school to know how her life had changed, but she didn't want to tell them.

    Then, an assignment for her anatomy class became an inspiration to come forward. The teacher, by coincidence, had asked her to write a report on multiple sclerosis.

    Standing before her classmates, Tiffany spoke of her fear, her faith and her confusion about what it means to stand on the edge of adulthood, trying to accept a lifelong illness.

    "At times, I still feel like MS is taking over my life. I'm still struggling with that," she said. But "I have to tell myself to stop wondering what will become of me. I know that no matter what, I won't give up."

    Source: Chicago Tribune Copyright © 2006, Chicago Tribune

    Paediatric MS
    Rare and often misdiagnosed, paediatric multiple sclerosis may be on the rise.

    It just doesn’t seem fair, if words like “fair” may ever be used when speaking of illnesses. Multiple sclerosis — a disease in which the body’s immune system attacks its own myelin, a fatty tissue meant to protect the central nervous system — affects twice as many females as males. Symptoms typically manifest in adults between the ages of 20 and 45.

    But Bryan Yglesias was 10 when, in August 2005, he was diagnosed with MS. And he was just 5 when he first complained of having “tingly hands.”

    “Nothing fits,” his mother said. “The chances of a kid younger than 16 being diagnosed are between 2 percent and 5 percent, and MS is rare in Hispanics.”

    Bryan lives in Hesperia with his father, Nick; his mother, Kathy; and his brother, Justin, 15.

    Nick works for Hesperia High School’s athletic department; Kathy works in food service for the Hesperia Unified School District. Justin is a sophomore at Hesperia High School.

    In February 2005 Bryan was diagnosed (misdiagnosed, Kathy thinks) with Bell’s palsy, a temporary facial paralysis caused by damage to one of the two facial nerves.

    Put on steroids, he gained 33 pounds in just six months, going from 107 to 140.

    Before becoming sick, Bryan, an avid soccer player, had played all three midfield positions. Now it was hard for him to balance.

    “He walked as if he were drunk,” Kathy said. “At first I thought it was because he’d suddenly gotten so much bigger.

    “But he also felt weak and couldn’t sign his name.”

    Bryan recalled “feeling heavy and tingly on my right side.”

    After two spinal taps ruled out Lyme disease, West Nile virus and meningitis, three MRIs of his brain revealed lesions where myelin had been destroyed.

    Bryan would be hospitalised three times at Loma Linda University Children’s Hospital: in August 2005 and again in January and February of this year.

    In March, Bryan’s parents began taking him to the University of California, San Francisco’s Regional brand-new Paediatric Multiple Sclerosis Center.

    There he is seen by a doctor, a nurse, two neurologists, a paediatric psychologist and a school psychologist.

    The school psychologist, Mary Crittenden, assessed Bryan’s mood, memory and cognitive functions to establish a baseline for charting the progress of his disease.

    “Our insurance doesn’t cover his treatment, so UCSF sees us for free,” a grateful Nick said.

    Once a week, Bryan is given an injection of Avonex, a medicine designed to keep the body from attacking itself.

    For fear of side effects, he started the Avonex on May 25, the last day of school.

    “I get the shot at 5 p.m. and by 7 p.m. the side effects — tired, achy, chills — kick in,” Bryan said. “But they’re gone by the next morning.”

    If it wasn’t covered by the family’s HMO, Bryan’s medication would cost them $1,600 a month for four injections.

    Of the four forms of MS — relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing — Bryan has relapsing-remitting. The most common form, it is characterised by flare-ups of new symptoms or exacerbation of existing symptoms, followed by periods of partial or complete recovery.

    “When he has a relapse,” Nick said, “Bryan goes to physical therapy: lifting weights, doing pushups, working with a balance ball, two or three times a week for two months.”

    “We let him recover but don’t let him get lazy,” said Kathy.

    Nick agreed: “We can’t let the disease win.”

    UCSF’s is the only paediatric MS center west of the Rocky Mountains supported by a grant from the National Multiple Sclerosis Society (NMSS). The other five campuses are in Rochester, Minn.; Buffalo, N.Y.; Stony Brook, N.Y.; Boston, Mass.; and Birmingham, Ala.

    But the Yglesiases have heard that a satellite may be started at the University of California, Los Angeles — much closer to home.

    “Now that we’re seeing all these kids being diagnosed,” said Cindy Langwell, field programs manager for the Inland Empire Field Office of the NMSS’ Southern California Chapter, “it’s very important that the program come down here.”

    Once a month, the NMSS hosts a chat line for teenagers with multiple sclerosis.

    “But I want to meet other kids with MS,” said Bryan, who admits to feeling “different.”

    He’s also noticed how often his father asks if he’s doing all right.

    “That is love, Bryan,” Kathy reminded him. “Love and stress.”

    At Maple School, where Bryan is in the sixth grade, only his closest friends know that he is sick.

    “He doesn’t want the label ‘I have a disease,’ ” his mother said. “But I think other kids should know — just in case something happens.”

    Word may get out soon enough.

    Last year the Yglesiases took part in NMSS’ fundraising walk. And on April 14 Bryan plans to walk again, this time with his soccer team, the Apple Valley Storm. His favourite subject is math, but Bryan hasn’t yet chosen a career. “When he was little,” Kathy said, “he wanted to be a scientist and ‘cure something.’ Now he says no. “But I say, ‘Cure MS!’”

    Source: Daily Press Copyright © 2006 Daily Press

    Multiple sclerosis strikes teens and children, too
    Jessica Broderick, now 23, was a healthy, active and athletic teen. She started swimming competitively at age 8 and by the time she was a junior in high school, was swimming year-round with two teams.

    Her junior year at Walkersville High School, 16-year-old Jessica decided to stop swimming so she could pursue other interests.

    That same year, she began to notice numbness in her legs and arm. The sensation would randomly appear, then disappear. A few times she "tripped" and fell, and would occasionally drop things.

    "She wasn't feeling well and was fatigued," said her mother Susan Broderick.

    The numbness continued to reoccur, so Susan scheduled a doctor's visit for Jessica. The doctor asked her to do a few simple tests, such as hold her arms out straight with her fingers stretched.

    "She couldn't do it," said Susan. "She couldn't balance on her tiptoes or put one foot in front of the other to walk a straight line. I said, 'Jessica! You can do this.' She was an athlete, a swimmer. She couldn't do any of it."

    The doctor scheduled blood tests and MRIs for the next day and the Brodericks would see the doctor again the following day.

    "MRIs don't happen that fast. I thought something was bad, but I still couldn't focus on that," said Susan.

    After the tests were complete but before they met again with the doctor, Susan took a call at home from a neurologist's office about making an appointment for her daughter.

    "I thought, 'Oh my God. I'm not going to get through this,'" said Susan.

    Her concern was heightened when, the next day, at the doctor's office, the staff was rescheduling appointments of patients in the waiting room so the doctor would have time to meet with the Brodericks.

    "(The doctor) said the good news is you don't have a brain tumor. The bad news is you have MS (multiple sclerosis)," recalled Susan.

    "I was shocked. I was scared," said Jessica in a phone interview from Morgantown, W.Va., where she now lives.

    Susan, who is generally upbeat and positive, said she was devastated by the diagnosis. "I didn't know anything about (MS) and Jessica was so young. My mind went in a hundred different directions and I had to go home and research it my own way," she said.

    MS is an autoimmune disease that affects the body's central nervous system -- the brain, spinal cord and optic nerves, according to the National Multiple Sclerosis Society's Web site. The exact cause is not known.

    Myelin, a fatty tissue that protects nerve fibers, helps nerve fibers conduct electrical impulses. In MS, the myelin is lost in "multiple" areas, leaving scar tissue called "sclerosis." These areas become damaged or destroyed. When that happens, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, which produces the various symptoms of MS, including numbness, vision problems and sensitivity to heat.

    Living with MS

    Jessica's diagnosis was a bit unusual in that she was just 16. Typically, MS is diagnosed in adults between the ages of 20 and 50. Finding a neurologist to take Jessica on as a patient was a challenge, recalled Susan.

    After being rejected by a few, because of Jessica's age and MS, they finally met with a neurologist at Children's Hospital. He concurred that Jessica had MS and referred her to a neurologist in Laurel, closer to home than his Fairfax, Va., office.

    This second neurologist performed more skills tests with Jessica. "She was talking with her and doing these tests, including a shopping scenario that involved simple math. Jessica couldn't do it and the tears started streaming," said her mother.

    The doctor wanted Jessica to begin treatment with one of the three drugs then approved for MS, but Susan was resistant, uncertain of the short- and long-term side effects.

    As Jessica's senior year started, her vision blurred and the movement of her eyes became out of sync. A treatment of "mega doses" of corticosteroids restored her eyesight, said her mother. During the therapy, Jessica experienced bloating, mood swings and "was wired."

    Her high-school swim coach and another coach "took Jessica under their wing" and helped her with strength training. "They helped her so much that first year," said Susan.

    "I kept thinking this was going to go away, but she kept having episodes," said Susan. "The episodes were lasting five to seven weeks."

    Uncertain about their daughter's future health, the Brodericks told Jessica she wouldn't be able to go away to college.

    "That hit me kind of hard at first," said Jessica. "I was planning on going away. I'm a pretty independent person."

    Susan attended an MS education day held in Frederick and sponsored by the MS society. Dr. Carlo Tornatore, with Georgetown University Hospital, was a featured speaker.

    "He was so articulate, compassionate and convincing. I said to my husband, 'He's going to be Jessica's doctor, and she's going on Avonex,'" said Susan. Avonex, injected into the muscle, reduces the frequency and severity of attacks.

    "His presentation was easy to follow and gave me the information I needed. He said, 'In my opinion if you have one episode you will have another. It's destroying you,'" recalled Susan. "If the other doctors said that, I wasn't hearing it. Whatever he said, I heard it."

    He did become Jessica's doctor and she started with weekly injections of Avonex. "It has side effects -- flu-like symptoms, nausea and feeling hot," said Susan. "It took about six months for that to stop. We told her she had to be on Avonex for a while before we would let her go off to college."

    In the spring of her senior year, Jessica applied to West Virginia University and started that fall.

    The uncertainty

    Jessica graduated from WVU and is a social worker in Morgantown, and she's engaged to be married next spring. Then she plans to pursue a degree in nursing or another health field.

    "The hardest part (of living with MS) is not knowing how my body is going to react from day to day," said Jessica. "You just have to stay positive."

    She still has exacerbations that, typically, affect her legs. "They go numb and I have difficulty walking," she said.

    "I've dealt with it for seven years. I've learned how to deal with it," said Jessica, who exercises regularly and eats a healthy diet. "The better shape you are in, the better off you are."

    Her advice to anyone diagonosed with MS: "Stay positive and take care of yourself. You have to take every day as a new day," she said.

    "Don't give up on your dreams, because you can do anything you want, really," she said.

    Source: The Frederick News-Post Copyright 1997-06 Randall Family, LLC

    'Montel' show about MS features area girl
    Briana Landis, TV host illustrate disease's reach.

    Since he was diagnosed with multiple sclerosis in 1999, TV talk-show host Montel Williams has dedicated one program per season to people with the disease.

    This year it's Aug. 7. And one of the guests will be Briana Landis of Kannapolis.

    She's an unusual guest because she's only 8.

    Just as Williams is proof that MS isn't only a disease among white men and women, Briana shows it isn't just a disease among adults.

    Briana was diagnosed with MS when she was 5, but she'd already had symptoms -- vision impairment in one eye and headaches -- for a year.

    Briana's disorder was difficult to diagnose because most doctors don't even learn that children can have MS. In fact, paediatric cases occur in about 3-5 percent of children, and the rate has been inexplicably on the rise in recent years.

    Multiple sclerosis is an unpredictable disease of the central nervous system in which the protective covering, called the myelin sheath, around the nerves is destroyed. This results in interference with the ways the brain signals various parts of the body. MS can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted.

    Because of a drug called Betaseron, Briana has been functioning normally for the past three years, with only one relapse, according to her mother, Kathi Landis, a counselor at Jackson Park Elementary in Kannapolis.

    Briana must avoid the sun as much as possible. "Heat is the enemy to someone with MS," her mother said. "You can just pass out with no warning." Still, she is playing summer baseball every Saturday.

    "As long as we keep a close watch on her, and keep her hydrated, she's hung in there," Kathi Landis said. "The doctors say as long as she loves something, and it's working, don't take it away from her."

    Briana is well-known in Cabarrus County and in MS circles for her willingness to speak about MS and help raise money for research. That prominence helped bring her to the attention of people from the "The Montel Williams Show."

    Mother and daughter flew to New York on May 2. The show picked up their tab for taxis and hotel, and they spent free time seeing the huge Toys "R" Us store in Times Square and "Mama Mia" on Broadway.

    A driver picked them up the next day and took them to the TV studio, where they were attended to by hair stylists and makeup artists. At the taping, everyone in the audience either had MS or was close to somebody who does.

    To show the many faces of MS, Williams interviewed a black woman who had been a ballerina, a white male attorney in his 40s, and Briana.

    The rising fourth-grader told how she has won her school reading competition every year since kindergarten.

    "Two of those years, I only used one eye," Briana said by telephone recently.

    Appearing on the show was a dream realised. "I always wanted to meet Montel," she said, "because he knows what I'm going through, because sometimes he has the same symptoms."

    The big surprise, Kathi Landis said, was that Williams pledged to create a Briana Landis Fund inside his Montel Williams MS Foundation. Donations sent in Briana's name will go to designated research projects.

    Source: Charlotte Observer © Copyright 2006 The Charlotte Observer. All Rights Reserved

    Young, Happy, In pain
    When Angelee Smart attended a multiple sclerosis support group with her mom, Tiffany Smart, she didn't see many people like herself.

    The others were middle age -- some even had walkers or were in wheel chairs. Angelee, at 9 years old, wears braids and a big smile.

    Although she was a rare addition to the group, she has a lot in common with members.

    Angelee, an energetic third-grader at Wakarusa Elementary School, was diagnosed with paediatric multiple sclerosis late last year.

    Hardly a pre-teen, she's one of the youngest people in the state and even the country to be diagnosed with a disease once considered for adults only.

    Angelee deals with blurred vision, muscle spasms, headaches, leg pains and daily fatigue. She also has asthma and is allergic to a wide variety of foods and airborne allergens.

    "It's scary," said Angelee of being a young person diagnosed with MS. "Because I don't like to have pains, and I'm seriously a baby with shots."

    Since the 1980s, the number of children and adolescents diagnosed with MS is growing. The National Multiple Sclerosis Society attributes this to modern technology, such as the MRI, and new ways of detecting MS lesions in the brain and spinal cord.

    Because paediatric MS is a fairly new phenomenon, young children are often misdiagnosed or their symptoms are explained away.

    Although Angelee was diagnosed in October 2005, Smart believes her daughter had her first MS attack when she was as young as 6 months old.

    "She did really weird things when she was little, and the doctors couldn't explain it ... she was really sick," said Smart.

    When Angelee lost her eyesight for the second time, she was referred to Riley's Hospital for Children in Indianapolis.

    It was there Angelee got a spinal tap and an MRI, and doctors saw MS-like new and old lesions on her brain.

    Smart wishes doctors would have pursued it more when Angelee was little, but understands MS is not necessarily a disease a doctor looks for in a child.

    "Now they're starting to see that it affects all walks, all ages," said Smart.

    The adult dosage of the injectable drug Angelee gets every day hasn't been tested or systematically studied for use in children.

    Tiffany Smart said giving the shots are the hardest for her. Although she rotates injection sites, the needles are long and kids sometimes bump into Angelee's sore muscles at school.

    "The first month was horrible; she screamed for two hours ... I didn't think I was going to be able to do it," she said.

    The Smarts now visit Riley's once a month, attend physical therapy at Union Center in Nappanee three times a week, and see a specialist at Indiana University.

    Despite her daily aches and pains, Angelee is known as a bright child who hardly complains. The school nurse at Wakarusa Elementary, Diana Brown, has known Angelee for about four years.

    Brown went through breast cancer this year and was treated by chemotherapy and radiation. Angelee visits her office daily.

    "She always wanted to comfort me, even if she wasn't feeling well," said Brown. "She would come into my office and give me little back rubs or put her arms around me and say, 'How you doing? I've missed you. How are you feeling?'"

    Brown calls Angelee "a delightful child" who is rarely sad. She believes Angelee is handling her disease better than many adults would.

    "She's many times said to me, 'I just know they're gonna find a cure for this ... I just know they will, it's gonna be OK,'" said Brown.

    The Smarts are doing everything in their power to push for further MS research so that someone can find a cure -- or at least invent an easier pill-form of medication -- during Angelee's lifetime.

    Smart started a group called Angelee's Angels, a team which will walk in her daughter's honor in the Michiana MS walk on May 6.

    The walk raises money to provide services to the more than 6,500 people in Indiana who have MS.

    The student council and National Junior Honor Society at West Side Middle School, where Smart works, gave up their lunch hours to sell paper Walk-A-Thon shoes during MS week last month. The shoes are one dollar, to help raise money for MS research.

    Smart hopes some area businesses will continue selling the shoes, and Angelee's Angels will be looking for sponsors for the walk.

    Source: etruth.com © Truth Publishing Co.. All Rights Reserved

    Living with MS
    Brandhi Russo is 16, and like thousands of other kids, she has multiple sclerosis.

    When she awoke one morning three years ago, Brandhi Russo was blind in her right eye and numb on the left side of her body.

    In the months that followed, the West Chester Township teen, who is now 16, struggled with often-changing symptoms. Numbness sometimes affected her left side, other times her right; sometimes her feet, hands, arms or legs. Her vision veered from blurry to spotty to black.

    A series of medical tests revealed that Brandhi has multiple sclerosis, an unpredictable disease of the central nervous system. There is no cure.

    When she returned to school, she brushed off her friends' questions. She wouldn't talk about having MS.

    "I was in denial," says Brandhi, who had never met anyone else with the disease - certainly no one her age.

    Multiple sclerosis, which affects an estimated 400,000 people in the U.S. and 2.5 million worldwide, has long been considered an adult disease. Most people with the condition are diagnosed between the ages of 20 and 50.

    But with the advent of the MRI and other diagnostic tools, the number of children and adolescents diagnosed with MS is growing. The National Multiple Sclerosis Society estimates that 8,000 to 10,000 children have MS, and another 10,000 to 15,000 have experienced symptoms of the disease.

    In November, the National MS Society announced it would invest $13.5 million to establish a network of six pediatric MS centers to treat children and to conduct research; the closest to Cincinnati is Children's Hospital of Alabama/University of Alabama at Birmingham.

    Against that backdrop, the National MS Society is promoting National MS Awareness Week (this week, March 13-17) with a Web site called the Face of MS. People can contribute their stories to what is described as an interactive work of art.

    STATE OF DENIAL

    Three years ago, Brandhi Russo had no interest in telling her story.

    "It was pretty much, if I didn't talk about (MS), if I didn't deal with it, then I didn't have it," she says.

    The Lakota West High junior wears her jeans fashionably torn and her blond hair long. She's just returned from school to the condominium she shares with her parents, Kim and Felix, and 11-year-old brother, Ronnie. Her upstairs bedroom offers a window into what's important to her, such as hockey and Rocky (the boxer). A pair of boxing gloves hangs on a wall.

    On another wall are autographed photos of professional race car driver Kelly "Girl" Sutton. On one, Sutton wrote: "Dare to dream."

    Sutton is 34, has been racing 15 years, and is in her third season with the NASCAR Craftsman Truck Series. She met Brandhi two years ago while speaking in Cincinnati.

    "I saw myself," the driver says from her garage in Huntersville, N.C. "I was 16 when I was diagnosed (with MS). I felt like my world was over. I connected with her because I felt her pain, because I had walked in those shoes.

    "I wanted to help her through this tender part of her life. She's a teenager. There are so many things you feel you're going to lose because of MS. I wanted her to know she had somebody she could talk to."

    Sutton gave Brandhi her personal e-mail address and phone number. She sometimes checked on her friend. One call came the night before Brandhi began injections of drugs that modify the course of the disease and help manage symptoms.

    "She told me to hang in there, keep fighting," Brandhi says.

    The teen has been to several of the driver's races. The first was in Indianapolis, where Brandhi watched Sutton, who has had MS for 18 years, speed around a track at 180 mph.

    In the stands, Brandhi leaned close to her mother and said: "You know what? I can do this."

    She wasn't referring to racing. "She was out of denial," her mother says. "She was ready to accept (having MS)."

    And she was ready to help others.

    Since Brandhi's diagnosis, her mother had been scouring the Internet for resources and support groups for children with MS, but found little.

    To fill that void, Brandhi and her mother founded MS Kids Connection. They've applied for nonprofit status for the organization, whose mission is to raise public awareness about pediatric MS; bring patients and families together in a supportive network; and provide continuing education. They've created a Web site, www.mskidsconnection.com, although Kim is still looking for help with the design.

    The organization has sponsored several programs including a college and career event. It operates Club Hope for children who have parents or siblings with MS; and it makes resources available to students with MS and their teachers.

    About the time the organization was being formed, Brandhi made her first foray into public speaking. She agreed to be interviewed by two junior high students for their school's MS Awareness Week.

    As word has spread, the invitations have increased. She has spoken to support groups, youth groups, churches. A few weeks ago at her own church, Landmark Baptist Temple in Evendale, she addressed hundreds of people.

    Her talks include references to Rocky Balboa, the fictional boxer made famous in film by actor Sylvester Stallone.

    "I love Rocky," Brandhi says with a dimpled smile, because her family is Italian.

    Both she and Rocky are fighters.

    Helen Bisdorf, a 40-something Sharonville resident diagnosed with MS four years ago, has heard Brandhi speak to support groups.

    "After listening to Brandhi, adults say, 'I know I can handle this. If she can handle it and share her story, I can find something within myself.' "

    RAISING AWARENESS

    Last November, at the National MS Society leadership conference in Atlanta, Brandhi received a National MS Leaders of Hope award for her work in bringing awareness to her community and peers.

    "She's come a long way," says Sutton, her race car driver friend. "She's a very strong young lady. She is going to make a lot of difference in people's lives. It gives me chills. I am extremely proud of her and am honored to know her."

    Medication has helped keep most of Brandhi's symptoms, such as numbness and vision loss, at bay. But she still struggles with fatigue. Given the unpredictable nature of MS, "I could wake up tomorrow and not be able to walk the rest of my life," she says. "But I don't sit here and think about that."

    Nor does she ask the question that once troubled her: Why me?

    "I just realized God had bigger stuff for me to do."

    Source: Cincinatti.com Copyright © 1995-2006

    The New Face of Multiple Sclerosis
    Doctors Increasingly Detect The Disorder in Children; Recognizing Early Signs

    Multiple sclerosis, a potentially devastating disease that affects the central nervous system, has long been considered an adult condition. But doctors are increasingly diagnosing the disease in children and teens -- and they believe that thousands more young people may have symptoms that are going undetected.

    As a result, medical researchers are beginning to study MS specifically in young people. The hope is that a better understanding of paediatric MS will not only help children -- for whom the disease poses a number of unique issues -- but also yield insights into the causes of multiple sclerosis generally. Some research indicates that MS may be related to an environmental trigger early in life, so researchers are looking for clues in children that could lead to better diagnosis and treatment for everyone.

    A diagnosis of MS in kids is rare: Most of the approximately 400,000 patients in the U.S. are adults, usually diagnosed between the ages of 20 and 50. Just 10,000 children, mostly age 10 to 17, are believed to have MS. But doctors also say that as many as 15,000 more kids may experience signs of the disease, such as blurry vision, numbness and fatigue, that go unrecognized. Because the disease is largely found in adults and symptoms can come and go, doctors typically don't suspect MS.

    Doctors have known for many years that the disease can occur in children, but diagnosis was rare. Now, improvements in diagnostic imaging tests, a broader array of drugs available to slow the disease, and growing anecdotal evidence that many adult patients had symptoms when they were younger are all helping fuel a drive to diagnose the condition early.

    There is no cure for MS, an autoimmune disorder in which immune cells enter the central nervous system, causing inflammation that damages myelin, the protective coating around nerve cells. The disease isn't usually fatal, except in rare cases. But it can scar the brain, spinal cord and optic nerves with lesions that leave people with varying degrees of physical and cognitive problems. Some patients become disabled and wind up in a wheelchair. To help slow the progression of the disease, patients are usually on medication for the rest of their lives.

    To further understanding and awareness of paediatric MS, the National Multiple Sclerosis Society is providing $13.5 million over the next five years to six regional pediatric MS centers that will focus on treatment and research. The centers, at the University of Alabama in Birmingham, State University of New York at Buffalo, the Mayo Clinic in Rochester, Minn., Stony Brook University Hospital in Long Island, the Massachusetts General Hospital for Children in Boston, and the University of California in San Francisco, will pool their data in an effort to establish the first national database of paediatric MS cases. Researchers say the database will lead to more clinical trials involving children, who are often treated for multiple sclerosis with medicines that are approved for use in adults but haven't been rigorously studied in children.

    Medications to treat MS include the injectable drugs Avonex, Betaseron, Copaxone and Rebif, as well as Novantrone, which is given intravenously. The drugs can cause flulike symptoms, and are usually given to children in smaller doses than for adults. Another promising treatment, Tysabri, was pulled from the market last year over safety concerns, but it is now going back into clinical trials.

    No one knows the exact cause of multiple sclerosis, but it is believed that a combination of genetic factors and environmental triggers are at the root. Narrowing down what those triggers might be is a huge challenge. By the time patients are diagnosed as adults, "people have been exposed to hundreds of thousands of infectious agents, viruses, bacteria, allergens, you name it," says John Richert, vice president for research and clinical programs for the National Multiple Sclerosis Society in New York. Finding the environmental trigger "is virtually impossible at that point."

    Looking for Triggers

    In paediatric MS, however, the amount of time between the environmental trigger and the onset of disease may be much shorter. Studying children with MS "will give us a clearer view of what the likely important exposures have been that trigger the disease," says Dr. Richert. A better understanding of the causes of paediatric MS might also offer insights into other autoimmune diseases, such as lupus or rheumatoid arthritis, adds Lauren Krupp, director of the National Pediatric Multiple Sclerosis Center at Stony Brook University Hospital.

    Studies so far of children with multiple sclerosis have generally been small, making it difficult to draw broad conclusions. But paediatric MS appears to differ from the adult disease in some respects. Just like in the adult population, more females than males get paediatric MS. But while adults with the disease tend to be Caucasian women, in children doctors are seeing greater numbers of patients from minority populations, such as African-American, Latino, Asian and Middle Eastern.

    Cognitive Problems

    Doctors believe that hormones in growing children may make them more prone to relapses than adults. Cognitive problems in children, such as memory lapses or reading difficulty, may have a profound impact because children are still learning and developing, researchers say. No one knows yet whether children may experience permanent cognitive damage.

    It also takes children longer to reach a stage of the disease where they start experiencing disabilities, such as needing a cane or other assistance to walk. But because they get the disease at an earlier age, they can also become disabled at a much younger age than adults. This is one of the reasons why doctors say it is critical to identify MS in kids as early as possible and begin treating it.

    It isn't easy to diagnose multiple sclerosis because there is no single test yet for the disease. Instead, doctors rely mainly on imaging tests taken over time and observed for growing numbers of lesions. In children, it is even more difficult because there are no published guidelines on what constitutes pediatric MS. In addition, there are other more-common conditions in children that doctors are likely to think of first when presented with MS-like symptoms. For instance, acute disseminated encephalomyelitis, which can occur after a virus, can produce vision, balance or strength problems.

    Getting the Diagnosis

    For children who are diagnosed with MS, suffering from the disease is often a lonely and isolating experience. Unlike other chronic conditions that affect children, such as diabetes, children with MS usually don't know anyone else with the condition. At the age of 13, Amanda Driscoll, now a high-school freshman in Tewksbury, Mass., came downstairs before school complaining that her vision was blurry and she felt dizzy. The school nurse told Amanda's mother to take her to the doctor for an eye exam. This led to further tests, including an MRI, which turned up lesions on Amanda's brain. Eventually, she was diagnosed with MS, the only one in her school with the condition.

    Sitting in her doctor's office one day in February for a regular check-up, Amanda, now age 15, explained that she tries not to think about having MS because "I've heard that people with MS are in wheelchairs, and I don't want to think about that happening to me."

    Tanuja Chitnis, director of the Partners Pediatric Multiple Sclerosis Center at Massachusetts General Hospital for Children in Boston, told Amanda that medications like the one she is taking are able to slow down the course of the disease, and that fewer people end up with severe disabilities.

    Educating Others

    At school, Amanda said that her friends don't really understand MS. "One guy asked me if he kissed me, can he get MS," she recounted. (She told him no.) One time during a mile run in gym class, Amanda felt weak and tired. The gym teacher accused her of not trying hard enough. Dr. Chitnis sent a note into school explaining the disease and its symptoms. If Amanda feels numbness or tingling in her feet or arms during school, she said, "I brush over it and keep going until the symptom passes. I want to stand out at school, but not because I have MS."

    Amanda has already had to make some difficult decisions. Her doctor reviewed the medications that she could take. One, Avonex, required an injection once a week, but often made people feel like they have the flu, the doctor told her. The other, Copaxone, involved Amanda giving herself a shot every day, but that drug has fewer side effects. Amanda's mother thought she should choose the once-a-week medicine to minimize the distress of frequent shots. But Amanda went with the daily drug.

    "The other medicine needs a bigger needle," she said. "I'd rather do a little bit every night than one huge needle." She also wanted the drug with the least amount of side effects, she said, because, "I've got people to see and things to do."

    Source: The Wall Street Journal Copyright © 2006 Dow Jones & Company, Inc. All Rights Reserved

    © Multiple Sclerosis Resource Centre (MSRC)

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