In July 2018, DMRF Canada worked in partnership with OnResearch to properly quantify what cervical dystonia patients experience living in Quebec.
Sadly, the results were not surprising, but they are troubling.
The impact of Cervical Dystonia on people is intense, with ongoing pain, fatigue and difficulty with the most basic requirements of life. Sufferers would like any option to improve their outcomes. Some even mention that resources are limited and it feels like no one understands this ailment. Most people cannot find a treatment that fully addresses their symptoms. Most experience symptoms that never completely go away and some have symptoms that are not addressed at all.
A highlight of the survey findings are available here.
DMRF Canada is committed to developing a strategy to help support these patients in Quebec. Stay tuned for news coming on a variety of support initiatives in the coming months. For now, note that we have two support groups operating in Montreal. One of them is for French speaking patients, and the other is for English speaking patients.