Thursday, July 10, 2008

Hey! Not Just for Adults Anymore

Back in 1995 when doctors first suspected that I might have MS, I was told that MS strikes people in the prime of their life, meaning in their mid 30’s. Until recently, I thought that was true.

Now it is recognized that
“Kids Get MS, Too.”

MS strikes teenagers, children, and even infants. There are an estimated 8,000-10,000 children with MS in the US, and an additional 10,000 – 15,000 with related disorders who may go on to receive an MS diagnosis.

As a result, the National MS Society has targeted this community by setting up an
International Pediatric MS Study Group and is currently funding six Pediatric MS Centers of Excellence in the US. The current disease modifying therapies used for adults are not FDA approved for children, so this is an area of current research.

Just like MS in adults, pediatric MS victims suffer from cognitive problems (definitely messes up school work!), fatigue (ditto), bowel and bladder dysfunction, and depression. Very few MS support groups are targeted to teenagers or children.

If you want additional information about pediatric MS, check out these sites:
International Pediatric MS Study Group
http://www.ipmssg.org/home.html where Dr. Lauren Krupp notes:

"Children with MS represent an under-recognized, under-served group. Due to lack of awareness that children can get this disease, their diagnosis and treatment is sadly often delayed. Educational initiatives and increased clinical care
programs are sorely needed. Research on pediatric MS is also extremely important. Due to the short interval between potential environmental exposures and onset of the disease, studying children with MS may help unlock previously hidden answers to the causes of MS for all affected individuals. The IPMSSG is an exciting collaborative effort whose mission is to advance the clinical care, awareness, and research regarding pediatric MS."


Pediatric MS Support Group:
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-support-group/index.aspx

Pediatric MS:
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/index.aspx

National Pediatric MS Center at Stony Brook University Hospital and Medical Center (New York):
http://www.pediatricmscenter.org/default.aspx

Getting Results: Pediatric MS
http://www.pediatricmscenter.org/Lists/News/DispForm.aspx?ID=97&Source=http%3A%2F%2Fwww%2Epediatricmscenter%2Eorg%2Fdefault%2Easpx

Children's Hope for Understanding MS: http://www.chumsweb.org/

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2 comments:

  1. Thanks. I'm not surprised. I think that I developed MS with the onset of puberty although I can't prove it.

    ReplyDelete
  2. Wow - some of the articles say that doctors tend to dismiss the complaints, which leads to misdiagnosis. Go figure...

    ReplyDelete

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