September is dystonia awareness month! And no, dystonia is not a foreign country like Genovia in The Princess Diaries.
Dystonia is a little-known neurological disorder that presents with extreme involuntary muscle contractions that cause twisting, repetitive body movements and abnormal posture. It has painful and devastating effects on people's lives. There is no cure and many patients live with chronic pain.
Dystonia is more common than ALS and Huntington’s Disease combined, but I usually end up having to explain what it is.
Imagine being awake for days because excruciating spasms relentlessly grip your body. Imagine not being able to walk, swallow, speak or brush your teeth because you can’t control your movements. This is my reality and has been for the past ten years. It is also a reality I share with more than 500,000 Americans.
Dystonia can affect a person's entire body (generalized dystonia), like me, or it can affect a specific area(s) of a person's body such as their hand, eyelids or neck. Causes of dystonia can include brain injury or cerebral palsy, environmental factors, genetic factors, some anti-psychotic medications as well as unknown causes.
To learn even more about dystonia, please check out the Dystonia Medical Research Foundation (DMRF)'s website here: dystonia-foundation.org
Although this year's in-person Zoo Walks for the DMRF (Dystonia Medical Research Foundation) have been cancelled due to Covid-19, you can still join with people affected by dystonia all over the country at our Virtual Zoo Walk on September 12. Registration is FREE. If you'd like to, you can also purchase event T-shirts and support the DMRF in other ways on the event website. Here's the link to sign up and support and to the agenda:
IMPORTANT: Times shown are for Central Time. All events will happen an hour later in Eastern Time.