Tech Professional Strives to Reduce Stigma of Invisible Disabilities after Dystonia Diagnosis

Disabling Neurological Disorder Notorious for Ending Musicians' Careers Often Goes Misdiagnosed in Other Occupations
 
Devon Knightner developed focal hand dystonia, which is often misdiagnosed.
Devon Knightner developed focal hand dystonia, which is often misdiagnosed.
COLUMBIA, S.C. - Oct. 23, 2018 - PRLog -- Devon Knightner was a chat support lead for a major tech company when her hand inexplicably locked up in the middle of a live product launch. For weeks she could only keyboard one-handed. She chalked it up to carpal tunnel syndrome, an over-use injury. The painful muscle spasms did not improve with treatment. She lost use of the other hand. A neurologist finally diagnosed Knightner with focal hand dystonia, a brain disorder that hijacks a person's fine motor skills, causing involuntary muscle contractions and uncontrollable movements or fixed positions of the hands and fingers.

Knightner has chronic pain in her hands, can rarely drive more than 20 minutes at a time, and struggles through daily tasks: preparing meals, housework, flat-ironing her hair, working out. Her toddler sons kiss her hands when they notice her symptoms. Her eldest daughter recently began her first year of college, and her younger daughter is in middle school. Knightner is on disability leave from her job.

"I have to take extra steps to do nearly anything," explains Knightner. "I'm learning a whole new way of life right now. People with these disabilities need a voice, and to know they are not crazy. Just because I don't have a wheelchair that you can see, or some sort of impediment that you can identify, that does not mean it's not there."

Described centuries ago as 'writer's cramp' or 'scrivener's palsy,' focal hand dystonia has gained attention for exploding the careers of high-profile musicians including legendary pianists Leon Fleisher and Gary Graffman. It has also been blamed for wreaking havoc in typists, golfers, baseball players, surgeons, and numerous occupations that require skilled, repetitive fine motor movements. Symptoms are triggered by use of the hands. Otherwise, there is no noticeable disability.

According to the Dystonia Medical Research Foundation, dystonia can affect a single part of the body or many muscles simultaneously: hands, feet, neck, torso, face, eyes, even vocal cords. Dystonia is more common than Huntington's disease, muscular dystrophy, and Lou Gehrig's disease (ALS). The symptoms are frequently mistaken for orthopedic conditions, psychiatric disturbance, or signs of substance abuse. There is not yet a cure.

Knightner's ultimate goal is to promote access to adaptive equipment that may allow people with disabilities to accomplish daily tasks and remain employed: "While medical research fights for a cure, I'm fighting for quality of life."

The Dystonia Medical Research Foundation (DMRF) is a non-profit dystonia patient advocacy organization. The DMRF can be reached at 800-377-3978, dystonia@dystonia-foundation.org, or www.dystonia-foundation.org.

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Tags:Dystonia, Writer S Cramp, Hand
Industry:Health
Location:Columbia - South Carolina - United States
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