Jill Blackburn, president of Pediatric Multiple Sclerosis Alliance, reflects on her daughter’s pediatric MS diagnosis and the challenges of finding specialized care. She discusses early barriers to treatment, lack of support programs, and why raising awareness and building stronger resources for families remain vital.
Transcript
My daughter Sierra was 15 years old when she received her diagnosis in 2012. I worked at a large neuro hospital in Phoenix and we had no pediatric MS provider available in the city.
We were being treated with a pediatric neurologist in conjunction with an adult MS provider, and neither were comfortable taking care of her treatment. They just — they weren’t sure. They didn’t understand pediatric MS.
We traveled to the closest pediatric MS center, which was in San Francisco, and my daughter received her care there for several years until she turned 18 and was able to see an adult neurologist at that time who coordinated care with her pediatric neurologist in California.
We went through several medication denials, again because the medications are considered off-label use. The frustration at not being able to get any help, and not being able to connect with other pediatric MS families that were going through similar things, was incredibly frustrating.
So when I came across this group, I just jumped in with both feet and decided, I don’t want another parent to go through what our family went through with an initial diagnosis, having to try to locate a provider, ended up having to go out of state. The problems at school getting accommodations for her disabilities. It was just so important for me that another family not go through that same experience.
We were advised to attend a newly diagnosed seminar. My daughter had just turned 16 at the time.
When we went to that and walked into a room with probably 20 other people that were middle-aged, several of them in wheelchairs or using walkers or canes. And I remember looking at my daughter’s face and she was just mortified. Looking at this and thinking, I haven’t even started driving yet and this is what I’m going to be.
The moderator did a round table and my daughter and I were last, and she turned to me and asked me about my MS story, and I said, “I’m not the one who has it, it’s my daughter.” And they had no idea that children could get MS.
So it was very eye-opening and again decided there’s got to be a better way to raise awareness about pediatric MS and try to provide some of the support that was lacking at that time.
