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    You are here : Home » About MS » Paediatric Multiple Sclerosis » Teenagers With MS

    Teenagers With MS

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    Amy IronmongerPaediatic MS resources are sadly lacking in the UK and we at the MSRC are trying to provide as much information as possible for the growing number of families, having children affected by MS.

    If you are a family with a child/teenager who has been diagnosed with MS and would like to help others in a similar situation, then please get in touch with our Webmaster at [email protected] 

    Paediatric MS Information

    The MSRC has a number of pages, and links, which will be of use to those interested in Paediatric MS.

    Children With MS

    Paediatric Multiple Sclerosis News

    Paediatric Multiple Sclerosis Research

    Resources for Children/Teens with MS

    Multiple Sclerosis In Children

    Teenagers Stories

    Below are links to pages for Teenagers with MS to tell their own stories, together with  press coverage of their fight with MS.

    Jade Harmer

    Amy Ironmonger


    Daniel Lafferty


    Carl Nuttall

    Patsy Peebles

    Children with MS

    Supporting Teens with MS
    Jennifer Thannhauser, M.Ed.

    In 2004, the Multiple Sclerosis Society of Canada altered their reported average age of individuals afflicted by MS from ages 20-40 to 15-40, reflecting a shift in understanding about the disease. Increasingly, adolescents are being diagnosed with MS as a consequence of improved diagnostic techniques and increased understanding about the disease by medical professionals.

    The teen years are particularly important for social and emotional development, increasing the need for parents and health care professionals to be aware of the impact of a diagnosis of MS. It is not uncommon for adolescents diagnosed with MS to experience a grief reaction. A mixture of emotions and behaviours may occur over time, including sadness, anger, loneliness or withdrawal, depression and suicidal ideations, anxiety, self-doubt, and denial. These are natural reactions to any major loss. In particular, denial of the illness can at times be a healthy reaction as the teen tries to maintain a normal life. However, should the teen’s health and/or safety be at risk, it is important to seek out support from a health care professional.

    Teens diagnosed with MS may experience a variety of losses. Some teens have described shifts in their identity, marked by changes in abilities and sense of self. Others have felt they were labeled by their disease. Loss of control over their life has also been described by some teens with MS as a result of unpredictable symptoms and the use of new medications. Several teens have reported changes in friendships. Sometimes old friendships were lost; however, other friendships became stronger and new friendships often developed which were more supportive.

    Social support is very important for promoting positive adjustment to MS. Parents often experience their own grief in response to the diagnosis of their child, which can interfere with providing effective support. Further, teens may be hesitant to share their experiences for fear of causing parents to worry. It is important for parents to find their own resources for sharing what they are experiencing. Parents are also encouraged to maintain an open dialogue with their child to allow him/her to share thoughts, feelings, and experiences related to the MS when ready.

    Peers can play an important role in adjustment to MS for adolescents. Teens with MS have talked about the value of friends who could help with injections, carry their books in school, get their homework when they missed school, help with mobility, or just listen when they needed to talk. Friends can serve as a great distraction from physical problems and allow teens to feel normal. Supportive friendships are important for helping teens adjust to life with MS.

    In September 2008, a monthly social group began for local teens with MS in Calgary. Participants choose the monthly activities and snacks are provided. The focus of the group is not on the disease, but rather is a place to have fun and provides an environment where others understand the experiences of being a teenager with MS and are there to talk/listen when needed.

    "I Won't Let MS Beat Me" - Teens and MS

    Please watch this video, if you ever thought that Teens and Children do not get MS then think again! 

    © Multiple Sclerosis Resource Centre (MSRC)

    Teenage years can be tougher for those coping with multiple sclerosis

    Levi Barron

    It started when Levi Barron's right hand curled into a claw shortly after his 13th birthday.

    Always laid-back, he told his mom that he'd just learn to write with the other hand and not to worry.

    But the debilitating stiffness crept to his other hand, and soon the athletic hockey player was having trouble walking and even fell a few times.

    It took four doctors and a stint in hospital, paralyzed from the waist down and so dizzy he couldn't open his eyes without vomiting, for Levi to finally get a diagnosis of multiple sclerosis.

    "I remember just being so frightened and upset that I didn't know that kids got MS," says Karen Barron, Levi's mom.

    Once thought of as a young adult disease striking people in their 20s or 30s, it is increasingly being recognized that multiple sclerosis can actually emerge much earlier, says Jon Temme, vice-president of client services and research for the Multiple Sclerosis Society of Canada.

    "Certainly the likelihood of a child being diagnosed accurately is much greater now than it would have been a decade ago."

    Dr. Brenda Banwell, who runs the country's only paediatric MS clinic in Toronto, says it's not new that children get MS. But she says that more sophisticated medical imaging combined with research into a condition called acute disseminated encephalomyelitis (ADEM) has made it a much more common diagnosis over the past decade.

    The disease has now been recognized in children as young as toddlers, and is fairly frequently diagnosed in children under the age of 10, says Temme. Most commonly, though, it emerges in puberty and beyond, leaving teens to cope with a chronic disease with varied and debilitating symptoms.

    The disease attacks the protective myelin that covers the brain and spinal cord, causing inflammation that can lead to extreme fatigue, vision problems, memory difficulty, and even paralysis.

    Levi's case was exceptionally severe. Traditional treatments didn't stem the frequent relapses that left him in a wheelchair and hospitalized for months on end. Lesions in his brain left him feeling boiling hot despite a normal body temperature.

    It took a series of chemotherapy treatments to shock him out of the constant attacks his body had launched on itself.

    "That whole period of time was just so - I don't even know how to explain it. Just so terrifying and so full of uncertainty because (with) MS, you don't know," says Barron.

    It's hard for teens to come to grips with the diagnosis of a chronic disease, says Jennifer Thannhauser, who helps run a support group in Calgary and was herself diagnosed with MS at the age of 12. At that time, she was the youngest person ever diagnosed in Saskatchewan, and found herself thrust into support groups with people over the age of 40 who bore no resemblance to her reality.

    "I felt like the only one around who knew anything about it or had to experience it."

    Thannhauser, who is doing her PhD in counselling psychology working with teens with MS, says teens don't want to feel different from their peers.

    "It's wanting to feel normal and wanting to fit in with a group. And so having MS for a teenager can challenge that sense of being normal."

    Ten years ago, no clinical research across Canada focused on the childhood occurrence of MS, says Temme. Now, several large-scale projects are being conducted through a research network that spans the country, something that puts Canada at the forefront of pediatric MS research around the globe.

    Studies on young people with MS hold great promise in helping to discover what causes MS, something that has so far proven elusive. Since children have experienced fewer things than adults, it's a lot easier to figure out what viruses or environmental exposures could be relevant.

    "One of the things about children is they have the onset of their disease so close to what we think is the beginning. So looking for triggers or targets that start the disease process is a particularly appropriate thing to do in pediatrics," says Banwell.

    "Excitingly, if you find something that's present very early, the big push would be, is it something we could modify and therefore either reduce the risk of MS in other people, or alter the course of the disease by picking up on a particular trigger early on."

    After recognizing the need over the last decade, the MS society began focusing more of its energy on funding programs for children and teens. For the last two years, youths have been able to attend a summer camp in Ontario, providing what is for some the first chance to connect with others with the disease, says Temme.

    Levi is now 16, and bears very little resemblance to the sickly boy who couldn't stir from his hospital bed. Outside his house, his wheelchair lift now sits abandoned, covered in snow.

    After treatment began to work, he had to relearn how to walk because he'd lost all sensation in his legs.

    "I just can't feel my legs that much from my knee down. Temperature's a problem. Pretty much in my feet I can only feel pain if I'm going to feel temperature, if it's too hot or it's too cold, it's all I can feel," he says.

    While he attends the support group and also went to the first year of the MS camp, Levi says he and other kids with MS don't really discuss its impact on their lives when they get together.

    "We usually don't talk about MS that much, we just talk about how it's going, then we just do something together."

    As awareness grows, so does acceptance, says Thannhauser.

    "There are now more services available for teens, there's more resources, and because there's greater awareness that teens can have MS, it doesn't seem so strange," she says of how both teens and those around them react to a diagnosis.

    "The teenager isn't left out on their own, rather they have sources of support to go to, they're not criticized or questioned as much for the symptoms they report or for the illness that they have."

    Source: The Canadian Press © 2009 The Canadian Press (16/01/09)

    'My son was four when he developed MS'
    It is a common misconception that multiple sclerosis is a condition that affects only adults, but Liam Kelly is 14 and has already had it for a decade.

    When Liam was four he started to complain that his body was sore to the touch. Then suddenly he was unable to walk.

    His father, John, who is from Liverpool, said nobody knew what was wrong.

    "We went to the hospital and he was just screaming if anyone touched him," he said.

    "The doctors said they did not know what it was."

    Eventually MS was mooted after another relapse and a year later his diagnosis was confirmed.

    Liam's father said the not knowing had been dreadful.

    "I was horrified when I first got the diagnosis," said John. "I thought he is going to die, I thought it was final.

    "People say 'children don't get MS', but I am sorry they do."

    The MS Society says there is a misconception that MS does not occur in children.

    Their research suggests there could be thousands of children with MS in the UK.

    To highlight the issue, the MS Society held a conference this month with 60 experts and people from families with children affected by MS.

    They heard about one child with the condition who has incontinence, but had been refused access to the toilet by an ignorant teacher.

    Early treatment

    Liam was one of the first of his age group to be put forward for a new drug Tysabri - recently approved by the National Institute for Health and Clinical Excellence (NICE) - which is thought to help slow the progression of MS.

    He is currently in good shape - but his long-term prognosis is unclear.

    "No-one know what the future holds for Liam," said John.

    Typically, MS is diagnosed in adults aged between 20 and 40 and women are three times more likely to be diagnosed than men.

    Recent studies suggest as many as 9,000 people with the condition could have started showing symptoms under the age of 16.

    Evangeline Wassmer, a consultant paediatric neurologist at Birmingham Children's Hospital, stressed the importance of starting treatment as early as possible.

    "It is important to make an early diagnosis and initiate treatment so that these children can benefit from early treatment and an improved quality of life."

    The MS Society has recorded cases of children as young as 13 months showing symptoms.

    It warns that until it is widely recognised that children can get the condition, there will be confusion, with misdiagnosis and delays in treatment.

    Jayne Spink, director of policy and research at the MS Society, said: "There are potentially thousands of children living with MS whose symptoms are not being recognised.

    "Without better awareness of childhood MS these children could face years of care that fails to meet their needs, while their families are left in limbo.

    "In MS, early treatment improves your long-term prospects. It is vital that children with MS are not left out in the cold."

    Source: BBC Health © BBC 2007 (26/11/07)

    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.

    Teenager with multiple sclerosis maintains active, positive lifestyle

    Jodie Roth was pumping gas when she got the call. The woman on the other end, her 14-year-old daughter's neurologist, confirmed what no one thought was possible.

    "I don't mean to scare you," the doctor told Roth. "But it is definitely MS."

    It was May when Alexandra "Alie" Roth was diagnosed. This weekend, Alie, now 15, her parents and a team of about 40 people will participate in the North Broward District Hospital MS Walk at South County Regional Park in Boca Raton. They hope to raise $25,000 for MS research.

    The day Alie found out she had MS, she sat in her family's suburban Delray Beach home and listened to her dad, Fred, explain to her what his sobbing wife had told him earlier.

    Alie, who usually had a smile on her face, burst into tears. She didn't cry because she had a disease without a cure, nor was it because she hated hospitals - she was used to those.

    "All I could think about was that I was going to miss my sister's graduation and her speech at the graduation," Alie said of her older sister Lecia's graduation from Saint Andrew's School. "Plus, I wanted that weekend to be about her, not me. But every time I go into a hospital, all the focus is on me."

    In December 2004, Alie had surgery to repair a hole in her heart that she'd had since birth. Halfway through what was supposed to be a 2 1/2 - hour procedure, the surgeon found another hole, but the surgery was a success.

    Alie has a mild case of MS, a chronic inflammatory disease of the central nervous system. The Roths had trouble finding a doctor in the area who treated MS in children. They were told that Alie was only the 10th child in South Florida to be diagnosed with MS, Jodie Roth said. Even a top MS specialist told them he didn't treat anyone under 17. But Alie's neurologist persuaded him to change his mind because she was mature for her age.

    The doctor took her on as a patient and prescribed her Copaxone, which she injects every night before going to sleep.

    When the reality of her illness finally hit the usually happy Alie, so did the depression. "I stayed home and cried for a week straight," said the sophomore at Saint Andrew's School in Boca Raton.

    Alie is involved in the youth group at Temple Beth Am in Margate, but when a regional youth group reunion was coming up, she didn't want to go. But ever since she was in sixth grade, the local chapter of the United Synagogues of Youth had been a big part of Alie's life, and her mom wasn't about to let her miss it.

    "I went and had a great time," she said of the group's trip to Disney World. "And my legs didn't start hurting until the very end. I had to use a wheelchair for a little while."

    Jodie Roth was excited to have her outgoing daughter back. "MS then became just a part of her life, not the main focus," she said.

    Alie attended this year's youth group reunion at Universal Studios in Orlando and her legs didn't hurt until she hopped off the charter bus and got in the car to go home.

    "I think anyone's legs would hurt then," Jodie Roth said with smile.

    Alie does yoga once a week to keep her "body in check," she said. She's also on the Saint Andrew's cheerleading squad. Every student at the school is required to participate in at least one sport, and even though the requirement was waived for Alie, she wouldn't hear of it.

    "I want to be part of the school, too," she said.

    Alie wants to be a graphic designer someday. Later, she would like to own a vineyard in California's Napa Valley because she finds wine fascinating.

    "For now, having MS is no big deal. It's just one more thing on my plate," she said. "It'll make a good college essay."

    Source: The Palm Beach Post Copyright © 2007, The Palm Beach Post. All rights reserved.

    Teen MS patient publishes book

    Australian Broadcasting Corporation
    TV PROGRAM TRANSCRIPT Broadcast: 20/02/2007

    KERRY O'BRIEN: Usually the Make A Wish Foundation gets some predictable requests from sick children, understandable and predictable, like sending the family to Disneyland or meeting their favourite celebrity. But a Melbourne teenager had a different dream. Alex Neumann has multiple sclerosis and while battling her illness she's kept her spirits up by writing. Against all expectations, her work has now been published and has met with an overwhelming response. Ben Knight reports.

    BEN KNIGHT: Once again, Alex Neumann is back in hospital. But this time, she's just visiting. Two weeks ago, this 16 year old had her fourth round of chemotherapy as her doctors try to hold back the multiple sclerosis that's attacking her body. Today she's well, but she knows the symptoms will return.

    ALEX NEUMANN, AUTHOR: It is a little bit scary when you can't see properly and you can't walk properly and you think to yourself, am I going to end up in a wheelchair, am I going to end up blind, is this going to affect me for the rest of my life?

    BEN KNIGHT: Most likely it will because, as yet, there's no cure for MS. Multiple sclerosis is unusual in someone so young, which makes it even harder for her parents to cope with.

    GIOVANNA NEUMANN: Really difficult things for a mum to watch. She's had, you know, steroids that have made her, you know, gain a lot of weight, very demoralising stuff. Spinal taps, you know, things that are painful. Things that are scary.

    BEN KNIGHT: It's kept her out of school for weeks on end, but she's spent that time writing what turned into a short novel based on a girl with a terminal illness and the boy she falls in love with.

    ALEX NEUMANN: "She was sick, very sick. A visit to the hospital had confirmed it was serious."

    BEN KNIGHT: The first half of the book reads like an autobiography. But then it becomes a supernatural tale of revenge, and it's clear the lead character is not Alex Neumann.

    ALEX NEUMANN: None of the characters were really based on me as it is, but I guess I worked my emotions into there, like, not just my emotions on my fear about my illness and everything like that, just normal teenage things.

    BEN KNIGHT: Her doctor told the Make A Wish Foundation about it, who then got in touch with the publishing house Macmillan.

    BEV FRIEND, PAN MACMILLAN PUBLISHING: Normally kids ask for a trip to Disneyland or a shopping spree or a new computer or something like this, and Alex had written a book whilst she's been ill and all she wanted to be was published.

    BEN KNIGHT: The company was originally just going to print a few hundred copies with a nice cover, for Alex to hand around to friends and family. But, after reading it, they decided to make it a full commercial project.

    BEV FRIEND: Macmillan certainly wouldn't have published the book if it wasn't worthy of being published, so we can get that quite clear.

    BEN KNIGHT: Instead of the usual six months, the book was rushed to print in a matter of weeks.

    ALEX NEUMANN: They took out a couple of things and added in a couple of things. They took out the swear words.

    BEN KNIGHT: And then, it was on the shelves.

    ALEX NEUMANN: I saw it in Kmart down at Chermside Park and even though we had about 10 advance copies already, we bought one just because it was the sake of buying my book from a store.

    BEN KNIGHT: But there were bigger things to come, like the official launch and book signing.

    ALEX NEUMANN: I walked in and I was still a little bit struck at how big a deal it was, because I was expecting just a little thing in a bookshop, maybe.

    BEN KNIGHT: Instead she's in Melbourne's CBD. There might be soft drink instead of wine, but this is a serious book launch.

    ALEX NEUMANN: I'm a bit nervous because I think I have to do a speech thing.

    BEV FRIEND: I really could see that probably the best part of the wish would be in fact having the launch in a bookshop with a stack of books and a whole heap of people wanting to buy her book and have her sign it and take it home and read it.

    ATTENDEE: Your hands going to be tired by the end of all this.

    DR RICK LEVENTER: I think it's one of the things that's kept her optimistic and given her a focus and allowed her to think about things other than her illness.

    BEN KNIGHT: There are very few teenage authors in Australia, and Alex Neumann is no normal teenager, something that has cost her some friendships.

    ALEX NEUMANN: You lose things to talk about because they were all excited about, oh my god, that boy's so cute, and this is so amazing, and how cool and let's go down the shops. Whereas I had to talk about so much more.

    BEN KNIGHT: So far, it's going well. The warehouse is out of stock, and both publisher and author are keen to do the same again.

    GIOVANNA NEUMANN: She has a very mature outlook and her reason for wanting to do this was very genuine and it was showing other people out there, especially other kids going through a hard time, that you don't have to stop, you don't have to give up.

    ALEX NEUMANN: I look at it like I've done what I wanted to do. I'm normal in a lot of ways and I know I'm not in a lot of other ways. But yeah, I just I feel like I'm a normal teenage girl.

    KERRY O'BRIEN: And now for the next book.

    Source: ABC Broadcasting © 2007 ABC

    Brandhi's Story

    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 paediatric 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.


    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 paediatric MS; bring patients and families together in a supportive network; and provide continuing education. They've created a Web site,, 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.' "


    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: Copyright © 1995-2006

    © Multiple Sclerosis Resource Centre (MSRC)

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