My name is Bhooma Aravamathan. I'm a pediatric neurologist and movement disorder specialist and I work at Washington University in St. Louis in Missouri.
Dystonia is voluntary movement triggered overflow muscle activation. So, what that means is every time you try to make a movement, a part of your body that you don't want to move moves out of your control. Other triggers for dystonia can be tactile. So, things like transfers, getting stretched, having one part of your body stretched can trigger dystonia in a different part of your body. And stress and excitement can also be triggers for dystonia. So, it can look different. It can be there one minute and not be there the next minute and that makes it hard to pick up sometimes.
It's important to be aware of the severity of your dystonia because it's important to know which of your movement patterns impact your function so that the treatments we use can be targeted towards improving your function, first and foremost. It's also important to know about dystonia severity, so we can track how dystonia is improving hopefully after we institute treatment. And the last reason it's important to know about dystonia severity is to be able to test new treatments in clinical trials and to be able to have a good understanding of how new treatments affect dystonia severity so that we can get you those newest and latest treatments. The best way to get diagnosed and treated is to talk to your medical provider about the way you experience your own movements.