Sen. Wilkinson Brings Awareness to Dystonia

Wilkinson DystoniaSenator John Wilkinson (R- Toccoa) is working to bring more awareness to a crippling condition.

It’s called Dystonia and Wednesday was designated Dystonia Awareness Day at the Capitol.

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, often resulting in painful and debilitating body positions for the victim.

“As our country continues to shine light on the awful diseases and illnesses that face our country, I felt a personal obligation to bring awareness to this debilitating disorder,” said Sen. Wilkinson.  “Dystonia affects an estimated 300,000 people in North America alone, including my courageous wife, Debbie.  We urgently need to bring awareness to Dystonia because so many people are misdiagnosed, which in turn delays proper treatment.  This disorder can make the most simple tasks impossible to achieve, however I know as a state and a country, we can come together to combat this disorder through research and knowledge.”

Governor Nathan Deal presented members of Tyler’s Hope, a foundation established to advance research for a cure, discover effective treatments and promote for awareness and education of Dystonia, with a proclamation declaring September as Dystonia Awareness Month in Georgia.  Sen. Wilkinson also led the adoption of Senate Resolution 850 during the 2014 Legislative Session to recognize September as Dystonia Awareness Month.

“We are grateful that the state of Georgia has recognized September as Dystonia Awareness Month.  This is a big leap in the effort to spread awareness and educate,” said Rich Stabb, Co- Founder and President of Tyler’s Hope.  “Awareness will play a huge role in helping hundreds of thousands of people receive better treatments, quicker diagnosis, and ultimately finding a cure.”

 

Sen. Wilkinson’s wife, Debbie Wilkinson, a school teacher in Carnesville, Ga., noticed symptoms in 2006 when excessive, involuntary blinking began to impair her vision. 

In 2011, Wilkinson had an invasive procedure called Deep Brain Stimulation Surgery that dramatically improved her symptoms and pain.  She now partners with the Dystonia Medical Research Facility (DMRF) to lead the North Georgia Dystonia Support Group, which meets in Gainesville.  Wilkinson, along with other volunteers, are currently petitioning the White House to recognize Dystonia Awareness Month at the national level.

Dystonia is frequently misdiagnosed due to a lack of understanding and awareness of the disorder.  Children of virtually any age can be diagnosed while many adults become disabled in the prime of their lives.  It can affect multiple generations in a single family or occur sporadically with no family history. 

Symptoms of dystonia are not the same in every patient, and can affect a specific part of the body or many parts simultaneously.

For more information regarding Dystonia, please contact Jessica Feeley at DMRF at 800-377-3978, [email protected] or www.dystonia-foundation.org.  DMRF is a non-profit organization that strives to advance Dystonia research for improved treatments and ultimately a cure, promote awareness and education, and provide support resources for affected individuals and families.