My name is Jemma Frankel.

I’m a 16 year old high school junior and I have DYT1 Dystonia, a genetic form of a neurological movement disorder. After a long process I learned I had Dystonia when I was just 9 years old. I was, and still am, a very active girl. I loved all sports. When I was diagnosed all the activities I liked were put on pause; even just walking was challenge. When I was 10 years old I had what’s called deep brain stimulation (DBS) surgery, and now 5 years later I’m back to my original self doing everything I love. There are still a few kinks I have to figure out now and again, but I’m here to talk to you about your story, and your fears, because I’ve been there and can relate to what you’re going through.

Here is a link to an interview i did with the New York Times in 2023:

https://www.nytimes.com/2023/02/07/magazine/dystonia-diagnosis.html