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
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:
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-