Helping young people with MS
Though MS is rare in children, there are thought to be over 25,000 persons under the age of 18 who have symptoms that mimic MS. MS is notoriously hard to diagnose in adults, and the disease is even more difficult to identify in boys and girls, where it often mimics other childhood neurological disorders. Even if a child is properly diagnosed, doctors often have little experience treating children with MS and the drugs currently available for MS have not been extensively tested in children.
Funding from the Promise: 2010 Campaign established a national collaboration to support children with MS and related disorders: the Pediatric MS Centers of Excellence. These six centers are treating children under 18 who have MS and other central nervous system demyelinating diseases. Read more about Pediatric MS Centers of Excellence and pediatric MS.
The centers also are gathering critical data to ultimately help researchers worldwide better understand the course that MS takes from the very beginning of the disease, when symptoms first appear. They are implementing a uniform database to collect information that will be invaluable to MS researchers.
- The network will soon publish its first report in a peer reviewed journal. The study was originally reported at the American Academy of Neurology meeting in 2009 – the first platform presentation as research collaborators. Investigators reported key differences in the spinal fluid of children diagnosed with MS before and after age 11, which should be taken into consideration when children are being diagnosed.
- Approximately 1100 children and their families have received services at the six centers. The centers are able to provide all families with a child with MS or other central nervous system related disorders with the kind of help they need.
- The network of centers has established work groups to achieve consensus on protocols they will all follow related to collecting data, MR imaging, and neuropsychological testing, and they are working on an algorithm, or formula, for making treatment decisions.
- To enhance the ability of the centers to share data and conduct research, a national pediatric MS data center is working with the centers to store, monitor, and analyze aggregate data collected by the network of pediatric MS centers.
- A brochure on pediatric MS and the network of Pediatric MS Centers of Excellence has been developed and is now available as a tool to inform doctors and families and donors of the resources available to them. The network also collaborated with the Society to produce “Students with MS & the Academic Setting: A Handbook for School Personnel.”
- Over 50 scientific presentations have been made by pediatric center staff to disseminate new information about pediatric MS and related disorders to improve quality of life and care for these kids and their families.