DYSTONIA – What Is It?

Dystonia is a neurological movement disorder.  Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor.

There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Estimates suggest that no fewer than 300,000 people are affected in the United States and Canada alone. Dystonia causes varying degrees of disability and pain, from mild to severe.  It is the 3rd most prevalent movement disorder behind Tremor and Parkinson’s, and is more common than Huntington’s Disease, Muscular Dystrophy, and Lou Gehrig’s Disease combined.

Our Introduction to Dystonia

We were heartbroken and afraid when we learned that Caleb’s condition had no cure, and that it would likely cripple him more and more with time.  The Dystonia Medical Research Foundation (DMRF) has been there to support our family from the moment we first reached out for information.  Since that first contact, we’ve met some amazing individuals and families.  We’ve learned that dystonia does not discriminate, affecting people of all ages, races, genders, and national origins.  We’ve also learned that the best way to combat dystonia is to work tirelessly to increase awareness and raise funds to support the activities of the DMRF.  The DMRF is the tip of the spear when it comes to combating dystonia, organizing grants for researchers, advocating for federal funding and research, informing the affected community, and more.

Dystonia Affects YOUR Community

Local inspirations banner

Check out our Local Inspirations page to read stories shared by some of our new friends in the Upstate NY communities.  These are just a snippet of the stories out there, each one demonstrating both the devastating impact dystonia has on personal lives and the determination to not let dystonia define those affected.

Please Contact Us if you would like to add your personal story to the Local Inspirations page.

Caleb’s Dystonia Journey

Dystonia Stories Shared by 3 Local Voices