September is Dystonia Awareness Month
by Angela Warner, BC Brain Wellness Program Book Club Instructor
Did you know that September is Dystonia Awareness Month - or even what dystonia is? If not, you are not alone. This is because dystonia is one of the rare neurological conditions with very low public awareness and, consequently and unfortunately, it receives very little funding for research. As it is classed as a movement disorder, dystonia patients in B.C. are cared for by the movement disorders specialists at the Djavad Mowafaghian Centre for Brain Health at UBC (also home to the BC Brain Wellness Program), as well as other neurologists in the community.
The National Institute of Neurological Disorders (NINDS) defines dystonia as "a movement disorder that involves unintended (involuntary) muscle contractions that can cause twisting and repetitive movements or abnormal postures". This is often painful, and can affect a single muscle, a group of muscles, or the entire body. There are three groups: idiopathic (with no clear cause); genetic (involving one or more gene mutations), and acquired (from environmental or other damage to the brain). Dystonia can be task-specific, occurring only when performing a specific, repetitive task, for example writer's cramp. Because it is a rare condition, it can take a long time for sufferers to be correctly diagnosed, with some being misdiagnosed with another condition initially, like cerebral palsy.
Current treatments include botulinum toxin (botox), medications and deep brain stimulation. Speech therapy, physical therapy, stress management and biofeedback may also be helpful. Initial symptoms may be very mild, but unfortunately the condition may progress, leading to fixed postures and shortened tendons.
In Canada, the Dystonia Medical Research Foundation Canada is dedicated to improving the lives of people suffering with dystonia. Their website, dystoniacanada.org, is a wonderful resource for all things dystonia-related, from how to find a support group to in-depth information on the condition, and from the latest research to how to access financial support. You can also get involved by donating or fundraising, and patients can tell their own stories with dystonia.
During last year's Dystonia Awareness Month, 30 landmarks across Canada (including the CN Tower and BC Place) were illuminated in blue and white, City of Toronto Mayor John Tory made a proclamation, there was a Dystonia Moves Me bingo challenge, and the #mydystonia&I webinar series was launched. Stay aware for this year's initiatives!