RIVER JOHN – A River John teenager is taking action to raise awareness of a rare neurological condition that has changed her family's life forever.
At age 15, Sara Langille has made it her mission to educate people about dystonia while fundraising to find a cure for the disease, which her father was diagnosed with about two years ago.
"It has affected us in many different ways," said Langille. "It was confusing at first. It was hard to see our Dad in so much pain."
Dystonia is considered a neurological movement disorder, which causes improper signalling from the brain to tighten and twist muscles involuntarily.
Muscle spasms force areas of the body into awkward movements and positions, and can be extremely painful.
Langille's father Kenny, age 44, suffers with retrocervical dystonia, which he describes as a constant pressure, pulling his neck up and backwards.
He is extremely proud of his daughter taking on a leadership role to spread awareness of dystonia.
"She was pretty worried about me," he said. "I was in bad shape. I wasn't mobile anymore.
"She takes stuff right into her own hands and works hard."
Along with her new cause to raise awareness of the disease, Langille is active in the Royal Canadian Air Cadet League, she volunteered as the village mascot Splash during a weeklong community celebration and participates in a number of other community-based organizations throughout the year.
Langille said her father has good days and bad days coping with the ongoing symptoms, often unable to enjoy spending time with his four children or participating in normal everyday activities.
"He has difficulty getting around," she said. "He doesn't like going out in public a lot.
"At first he thought it was a pinched nerve in his neck and then one day the pain was so bad he couldn't move anymore."
She said medical professionals were challenged to provide a diagnosis because the disorder is so rare, affecting an estimated 300,000 in the United States and Canada.
"We're not the only family suffering, there are many people in Canada suffering from it," she said. "I wanted to raise money for the Dystonia Foundation of Canada because currently there are no cures, there is only treatment for the symptoms."
Langille said along with funding research, donations raised for the foundation are used to assist families without health plan coverage with the $1,300 cost of Botulinum Toxin injections every 10 weeks, a treatment which limits involuntary movements.
Kenny receives about a dozen injections, sometimes more, during each treatment session, which helps him temporarily cope with the muscle spasms in his neck.
Langille is determined to find a cure and has begun selling blue bracelets supplied by the Dystonia Medical Research Foundation of Canada for $4 each and is giving white ribbons to donors.
She will also be appearing at community events and markets at future dates to raise awareness of the disease.
For more information about the campaign contact Langille at 351-2575.
Dystonia facts:
Dystonia is not a single disease. There are more than a dozen forms of dystonia, and it can be a symptom of many disorders and conditions.
Dystonia may be genetic or caused by factors such as physical trauma, exposure to certain medications, and other neurological/metabolic conditions. However, the precise biochemical process in the body that triggers symptoms remains unknown.
Some forms of dystonia affect a specific body area such as the neck, face, jaw, eyes, limbs or vocal cords.
Dystonia is the third most common movement disorder after tremor and Parkinson's disease. It affects men, women and children of all ages and backgrounds.
At this time there is no way to predict a prognosis but the age at which symptoms begin often affects if and how dystonia will spread to other body areas.
