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Walk to Raise Awareness of Dystonia

When Peggy Weeks was 36 and living in California, she was driving her children somewhere when her head suddenly kept jerking left. No matter how hard she tried, she was unable to keep it straight ahead and finally had to resort to holding it in place with her elbow propped up against the window.

A week later her chiropractor told her she may have a disorder called dystonia and a trip to a neurologist confirmed the chiropractor's suspicions. Weeks had cervical dystonia, which causes the neck muscles to contract involuntarily, causing abnormal movements and posture of the head and neck.

"It's the third most common movement disorder," said Weeks, 62, and now a Herndon resident, "but there's not much awareness about it. We don't have a Jerry Lewis or Michael J. Fox out there."

On Saturday, the Greater Washington Dystonia Support Group, in affiliation with the Dystonia Medical Research Foundation, will be holding the Fifth Annual Walk, Run and Roll from 11 a.m.-2 p.m., at the North Point Pavilion in Reston to raise awareness of the disorder and funds for research.

DYSTONIA IS a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. It can affect any part of the body including the arms, legs, torso, neck, eyelids, face or vocal cords. More than 500,000 people in North America have been diagnosed with the disorder.

The Dystonia Medical Research Foundation's Web site lists several types of primary dystonias, most of which are genetic. Secondary dystonias, on the other hand, are generally caused by outside factors such as exposure to certain medications, trauma, toxins, infections or stoke.

Weeks said that since hers was adult onset, it was mostly likely caused by a previous injury or trauma. She did say, however, that her grandmother may have had essential tremor, which is in the same family as dystonia; and that her grandmother's daughter had spasmodic dystonia, which is a form of dystonia that affects the vocal cords.

Weeks treats her dystonia with regular Botox injections, which weaken the muscles in her neck enough to prevent a spasm. She also worries about passing the disorder onto her children.

"I have two little grand babies. I wonder, what if I passed it on to them or their parents? What would happen then?" she said. "There are tests now, genetic tests, that can be done. Before, it was wait and see."

BY CONTRAST, Yvonne Bailey began showing symptoms of dystonia when she was 3 years old, however, she was not diagnosed until she was 38.

"Just think, if I had been diagnosed younger, what my quality of life could have been," said the 55-year-old Reston resident. "There was a period of time when I couldn't talk on the phone. I avoided life."

Bailey said she has mild, generalized dystonia, which affects different parts of her body including her hands and vocal chords. Growing up she would avoid public speaking in school and then later in the work place. She also would not sign for packages or take notes in front of people.

"My mother was a teacher, so I learned to read at age 3. In first grade going into the classroom, socially, was a shock because I couldn't do what the other kids were doing. I knew my ABCs and 123s, but couldn't say them like they did. I hid my tremors from my teachers," Bailey said. "When I got to college, if a class had a public speaking requirement on the syllabus, I dropped the course."

Bailey said that when she was young, most medical professionals would write-off her condition to a mental-health problem. Now, having been diagnosed and confident that it is not all in her head, Bailey does not shy away from speaking publicly. She describes herself as being "like a butterfly coming out of its cocoon."

"There is a fire burning in my soul because of my condition," she said. "I don't think I would be such an activist if I had Parkinson's or some other more widely known disorder. I've had people ask me if dystonia is a European country. It is not rare. It is not an orphan illness."

Looking back, Bailey believes the illness is hereditary. She said her father had severe neck problems and she has an uncle who was diagnosed with Parkinson's, which the family now believes was actually dystonia. Relatives have said tremors could be found throughout both her mother's and father's families.

"If I wasn't diagnosed in the '70s and '80s, you know my parents weren't diagnosed in the '40s and '50s," Bailey said.