Raising a fight against dystonia

Dystonia: a neurological disease that causes involuntary muscle contractions and repetitive twisting movements.

It is the third-most common movement disorder after Parkinson’s and essential tremors and affecting 250,000 people in the U.S. alone. And yet, few people have ever heard of it. Despite its commonality, the disease is not well known, and even some doctors are unfamiliar with it. This has created a high rate of misdiagnosis for people with dystonia.

For Linda Davis of the Medford Chamber of Commerce, who was diagnosed in 2009, her goal has been to raise awareness of this little-known disease. Her story with dystonia began over a decade ago, after she experienced unexplained body tremors and consistent twisting. This brought her to a neurologist, who quickly diagnosed her with a disease she had never heard of before. From there, her goal has been to educate people on dystonia through a variety of public events. She and her colleagues at the chamber and in local government have also issued proclamations to uplift Dystonia Awareness Month, which in Suffolk County has been recognized as the month of September.

According to Davis, “Awareness is so important because so many doctors don’t even know what [dystonia] is,” even though “more people are affected by dystonia than Huntington’s

disease, ALS, and muscular dystrophy combined (Dystonia Advocacy Network).”

Raising awareness for something that most people have not heard of is “extremely difficult.” At one of the first events Davis ever hosted for dystonia awareness, they asked the crowd how many people had heard of Parkinson's disease, or MS, or a certain type of cancer; they then asked, “How many people have heard of dystonia?” Apart from several of Davis’s close friends and family, or others with dystonia, only a handful of people raised their hands.

The symptoms include cramping and involuntary movements, slow, repetitive movements and abnormal posture. There is currently no cure for the disease; instead, treatments like a myriad of medications (anticonvulsants, muscle relaxers, etc.) are employed as well as Botox, which paralyzes affected muscles. Alongside medicine, physical therapy can be used to lighten the impact of tremors and cramps. In spite of this, “Living with this disease is difficult at best.”

In September, Davis and her coworker, Niel Marturiello, are hosting a raffle at Henry James Jones VFW Hall in Medford. Attendees can choose a gift basket and put in a ticket to win. Admission is $20 and up to 80 people can attend. To purchase a ticket, contact Marturiello at 631-289-3441; tickets will also be sold at the door (subject to availability). They are still accepting gift cards and baskets for the raffle, and Davis (631-897-9567) or Marturiello can be contacted for pickup. All the proceeds go to the Dystonia Medical Research Foundation.