Pediatric MS shouldn’t be a life sentence.
Pediatric MS – Why is it important and how YOU can help!
Pediatric multiple sclerosis accounts, currently, for up to 5% of all people diagnosed with MS in the United States. This translates to over 20,000 children under the age of 18 living with an under funded, under researched chronic incurable disease. And those are the lucky ones.
Conventional thinking among pediatric MS experts is the number of actual cases could be much higher. The reason, ignorance as a result of lack of training and proper education. Pediatric MS is a different disease than adult onset MS. Pediatric MS does not have the same geographic relationships, stress triggers or gender prevalences. Some studies suggest pediatric MS is more attributable to environmental stimulus, although the research is not conclusive on this.
Beyond the obvious goals of reducing suffering and disability in children, is the possibility that pediatric MS may be a more “pure” form of the disease, giving unique insight into what MS is and why people are afflicted with this debilitating chronic illness of the central nervous system (CNS). Pediatric MS is gender neutral, whereas adult onset MS afflicts 73% women versus 23% men, which suggests hormonal contributions. But ask adult onset MS patients when they feel their MS symptoms began and nearly all will tell you of symptoms in their teens or earlier.
In an age when we can splice DNA, clone animals and send camera laden spacecraft to photograph Pluto, why can we not even find a biomarker for multiple sclerosis, letalone develop truly effective ways to stop its progression, let alone cure it? Wouldn’t it be nice if there was a simple answer to this simple question, but there’s not.
The answer is out there, we just need to find it. How do we do that? Research and education. Funding of research in pediatric MS may hold the key to all MS onset, yet pediatric MS is the least funded area of study. We want to change that.
Recently the International Pediatric Multiple Sclerosis Study Group (IPMSSG) completed an incredible body of work that took over 60 neurologists, researchers and clinicians from 14 countries 13 YEARS to establish internationally recognized standards for the diagnosis and treatment of pediatric MS. This is a monumental achievement, and one to be lauded and praised. But as a patient advocacy organization, MS Cure Fund must ask, “How does this help a twelve year old be properly diagnosed in Haiti, Calcutta or China?” On its own, it doesn’t.
MS Cure Fund has made the commitment to work with the IPMSSG to see to it that the remarkable research they have dedicated careers to compiling is made available to everyone that treats pediatric patients. We see our role as patient advocates to make this body of work usable to the average ER physician or nurse, or primary care providers, the people who see pediatric MS patients first, before they know they have multiple sclerosis. We need to turn improper descriptions of s/he is just “clumsy”, or s/he “will grow out of it”, or “is just a little slow, s/he will catch up”. This is what happens in far too many cases of children who are eventually diagnosed with multiple sclerosis. These misdiagnosis cause unnecessary progression of a treatable disease resulting in the aforementioned high percentage of pediatric MS patients demonstrating cognitive impairment and earlier presentation of permanent motor disability later in life.
MS Cure Fund is partnering with the IPMSSG and has set an initial goal of $1,000,000 to fund the education of “first-line” healthcare providers through live conferences around the world and the establishment of a global internet repository of clinical guides to train and assist in the proper diagnosing of pediatric MS and demyelinating conditions of the central nervous system. Additionally, we will be creating informational guides for patients and families on what they can do through diet, exercise and stress management to minimize the deficits of an MS diagnosis and learn to lead a healthy life BEYOND their MS diagnosis.
DONATE! And donate again. Reach out to those with significant means and tell them how money donated in support of researching improved treatments and ultimately a cure for MS, especially pediatric MS, will have an exponentially increased impact on the lives of hundreds of thousands of children either undiagnosed or misdiagnosed causing irreparable suffering and disability.
Please, YOU CAN MAKE A DIFFERENCE! Whether it is $5, $5 a month or $500,000. Make your donation matter in the lives of children fighting this poorly understood and under researched disease.