J.K. Rowling, author of the Harry Potter books, had a mother with MS. She explains, more than the disease progression, the hard part was the deterioration of the quality of life that affected her mother and therefore her family. That is an important point, one that we sometimes forget. It may be easier to accept the progression of our chronic disease than it is to accept the decline in the quality of our lives. Further, when quality of life deteriorates, it is not only the person with the condition who is affected, but the family and extended family.
Rowling tells the story of a parent with MS. What about the story of a child or teen?
Children under 18 living with MS are fighting physical symptoms including fatigue, unexplained pain and walking problems. They fight cognitive problems that may include learning difficulties and depression.
One problem with pediatric MS has been the need for better national organization for handling the disease. The medical community does not yet have a recommended diagnosis protocol. The adult criteria outlined by Poser and McDonald work some of the time. Treatments are not set, unless you count the adult disease-modifying drugs with smaller dosages at the discretion of each doctor.
Of course, Pediatric MS Centers of Excellence are making great strides towards adding order and understanding from pediatric diagnosis throughout the course of the disease. In addition to developing a "consensus on protocols," they are also collecting and analyzing data on patients treated at their six centers. They are working on a national pediatric MS data center to help share the data.
This research is supported by the Promise: 2010 Campaign. The National MS Society local chapters are raising money to fund research that targets under-explored areas such as the Pediatric MS Centers of Excellence. This research, even for such a small portion of all MS patients, will possibly result in benefits for us all.