Individualizing treatment for a rare disease

Kelly Solak shared insights into myasthenia gravis, and how a snapshot tool can help direct physicians to the best treatment.

What is myasthenia gravis and what is the focus of your research?
Myasthenia gravis is a rare neuromuscular disease which affects the muscles of the body. It’s a very rare autoimmune disease—only 20 people in 100,000 have it. It can affect a person’s arms, or legs, or torso, or their breathing, or the muscles in their eyes. It usually presents itself in women in their second and third decades of life, or in men in their seventh or eighth decades.

Because this disease is so varied and individual, there is not a straight treatment route. I’m focusing in on a “quality of life survey” that will take snapshots for two weeks to help determine the best treatment. The survey has 15 questions that you ask one or two times a day. Instead of asking something like “can you walk up the stairs?” or “can you hold a carton of milk?” it asks “how long can you walk up the stairs before becoming fatigued?” This helps create a concise treatment route for the patient. It’s very specific.

I consulted with Michal Haran, M.D., at Kaplan Medical Center in Rehovot, Israel. She developed the original quality of life survey, and I built my project around her survey. Also Abbas Jowkar, M.D., who is in the Department of Neurology at Wayne State University School of Medicine, sponsored my research as a principal investigator. It was a long process, but I have met a lot of great people in the field. It’s difficult saying you are a high school student doing a project because they are busy, but if they are willing to take the time to help you, it’s pretty amazing.

You have personal experience with this disease.
Yes. My brother has this disease and he got it when he was 16 or 17 years old. His name is Kurt and he attended Liggett as well, and graduated in 2016. He’s 20 now.

What other topics were you also interested in pursuing for your ARP?
I’m a hockey player, so something regarding sports medicine. Women’s hockey is not as dominant as men’s, so maybe something about anatomy or sports management related to hockey. We were encouraged to choose something we are interested in but won’t get bored of. I play hockey four times a week, and add a project about hockey on top of that? This topic is definitely outside of my comfort zone.

How do you manage your time?
I prioritize. I bring work to the rink and do it with teammates. I also work as a waitress and barista at a bistro, and I love reading. I talk with the librarian who hands me new books when I come in. I read historical fiction, most are in the WWII era, I’d say.

I learned how to do correct research, find the right information, the right sources, and how to write in a scientific way. I gained confidence in reaching out to people. I also learned an appreciation for doing something different, not setting barriers, and never saying something is too big. It’s better to do something too big and reach a little farther than high school normally permits you to. In four years, you are out of high school, and on to college, and in the life after, you are more prepared. I had to start my project from scratch, and my inspiration was my brother. I also had help from my dad in approaching situations.