Understanding and Advocating for Pediatric Multiple Sclerosis (MS)
Young people with multiple sclerosis still make up a small minority of those with the disease, and it has been only recently that Pediatric MS has even been recognized. Just as with MS when it was first recognized, diagnostic criteria were unclear and treatments were on a trial-and-error basis. There was not a great deal of awareness of children with MS throughout the medical community, including diagnosis and treatment that might be different than adult processes.
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?When a child has MS, the family witnesses the deterioration of the quality of life when that child's life has hardly begun. This affects not only the child's life but also the parents who had hopes, the siblings who no longer have a "normal" life, and the entire extended family.
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.Perhaps the hardest concept of all for young MSers is trying to maintain the perception of belonging to any group of young people in school, the neighborhood, or any social group. We have to remember that children are not simply small adults, and belonging is an especially important feeling. The physical, psychological and social facets are difficult enough for any child or teen, but a chronic disease adds complications to any young person's quality of life.
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.
As Lisa tells us, the National MS Society has a feature called Mighty Special Kids that highlights young kids who have MS. These are kids who happen to have MS, but also find something good about it. For example, Madison gets to ride horses every other week — what kid wouldn't like that?
The Multiple Sclerosis Resource Center (MSRC) tells the stories of three young children diagnosed before they were ten. All of the kids are living just like other kids except they have pain and must take medication every week. These stories are told from the perspective of the parents. Zach's mom says Zach gets strength from his twin brother. Touchingly, she says, "In some ways, I think it's been harder on Caleb. He's had to be the one to watch it all."
MSRC also highlights teenagers with MS, including Brandhi who received a National MS Leaders of Hope award for her work in bringing awareness to her community and peers.
These stories tell of children experiencing pain and other physical and mental characteristics common among those of us with MS. The good news is that these kids seem comfortable within their peer groups. It seems these children, although they have aggressive forms of MS, are still enjoying a better quality of life than many kids who went before them.
The puzzle is not yet complete, but the pieces are beginning to fall in place. As order begins to find its way in Pediatric MS, there is hope for the children with MS yet to come.