Dystonia Medical Research Foundation Canada (DMRFC) is raising awareness about a neurological movement disorder it contends isn't getting enough attention.
Dystonia, for which there's no known cure, causes excessive involuntary muscle contractions, resulting in abnormal muscle movements, which may be mistaken for mental illness, substance abuse or poor social skills, according to DMRFC.
“Other than improving society’s recognition and understanding of dystonia, awareness is important for this rare disorder for a timely diagnosis and to reach the people and families who need our help,” DMRFC national director Archana Catelino said in an email. "We estimate that 50,000 Canadians are affected by dystonia. By increasing awareness, we hope that more dystonia patients will receive a proper and timely diagnosis and the treatment they need to live their best lives with the condition."
A study by DMRFC concluded that it took 63 per cent of respondents more than a year to receive a proper diagnosis for dystonia. "Of those individuals, 45 per cent stated that it took more than four years to be properly diagnosed and receive the correct treatment for their dystonia," Castelino said.
September is Dystonia Awareness Month.
DMRFC, a Toronto-based charity, holds an annual fundraiser in June at Downsview Park in North York. This past June, the event, dubbed "Freedom To Move: Run, Walk and Wheel for Dystonia," raised more than $53,000. The money helps fund research and helps support patients and their families.
Visit dystoniacanada.org for more information or to donate to the charity.