Mayor Bloomberg will announce Monday that June 18th will be known as Dystonia Call to Action Day. Never heard of Dystonia? That's the point.
Dystonia is a debilitating neurological movement disorder that causes involuntary muscle spasms and contortions of the body. These spasms cause irregular postures and repetitive twisting motions. Even though it affects roughly 500,000 people in North America, it's a little known disorder. And while there are treatments for Dystonia, there is no cure.
To help raise awareness, The Bachmann-Strauss Dystonia & Parkinson Foundation will hold an all-day event Monday, June 18th, commemorating the 20th anniversary of their annual fundraiser. Allison London, a 32-year-old New Yorker who was diagnosed with the disease in 2009, with be honored with the Scott M. Johnson Award at the event.
London said that before she was diagnosed, she had never even heard of the Dystonia, and when she started feeling a burning sensation in her torso, and noticed her posture getting worse and worse, doctors had no idea what was wrong with her. "It's not that the public hasn't heard of it before," she told Patch. "Doctors haven't either." From Patch:
London said one doctor—an expert in the field—even suggested she surgically insert rods into her back to keep it straight. When she was finally diagnosed in 2009, the news her doctor gave her was even more of a shock.
"They said to me: 'My gosh, your brain so doesn't want you straight,'" she said. "They said I would have broken those rods."
"I would say we are about 50 years behind where epilepsy was," Dr Nutan Sharma told CBS News," in terms our understanding of the disorder and developing good treatments for it."
Since her diagnosis London has been tirelessly fighting to raise awareness over the disease, and works with the Foundation to ensure people know how to spot the beginnings of the disorder. London, a lawyer, has has to put her life on hold to deal with Dystonia, but says that her husband has gotten her through the worst of it. The couple has raised over $100,000 for Dystonia research from the last two New York City Marathons.
Read more about London's fight to raise awareness over Dystonia here.
The Bachmann-Strauss Dystonia & Parkinson Foundation was founded by Bonnie Strauss in 1995 as a non-profit to aid in the awareness of those two diseases. Monday's Golf Invitational will include a Pro-Am tournament, cocktails and a live auction. Mayor Bloomberg news anchor Paula Zahn are set to speak. To read more about the foundation, click here.
In 2010 CBS filed this report about Dystonia, calling it a "Mystery Disease."