RSD Suffer Wants To Educate
by Sarah Bissonette
Wednesday, July 19, 2006
McKELLAR TWP. – Prior to November 28, 2003, Sue Hicks was an active woman who went to work, cut the grass, and played with her dogs. Now, she doesn’t know if she’ll be able to get out of bed on any given day and is in constant pain due to the incurable Reflex Sympatric Dystrophy (RSD).
Ms Hicks wants to make the public aware of the disorder, also known as Complex Regional Pain Syndrome (CRPS), which she hadn’t even heard of before being diagnosed over two years ago. At her request, on June 20, Parry Sound Town Council declared July as RSD/CRPS Awareness Month
“I don’t want to be known for my disorder,” said Ms Hicks. “I want our disorder known because of us. The first part of education starts with awareness.”
According to the British Columbia-based Canadian Reflex Sympathetic Dystrophy Network, RSD is a neurological disorder that affects blood flow, muscles, bones, joints and the skin. The first case of the disease was diagnosed during the American Civil War.
It can spread throughout the body, sometimes by something as simple as getting a needle in an unaffected region of the body.
Approximately 1 in 2,000 people have RSD. There is no known cure.
The disorder can begin from soft tissue damage, such as a sprained ankle, and surgery.
In Ms Hicks case, life with RSD began on November 28, 2003 when she shattered her right ankle at work and then had it operated on the next day. Six months later, an orthopedics’ specialist – a surgeon who corrects bone and muscle deformities – diagnosed her with the disorder in her right leg, which has since spread to her left arm.
Symptoms include: excessive sweating; muscle spasms and tremors; skin colour, hair and nail growth changes; decreased motor function and blood circulation; and constant pain.
“The sympathetic nerves realize there is damage there and it’s suppose to hurt. So, it tells the brain, all the time, that it’s hurt,” said Ms Hicks.
While Ms Hicks has the support of her husband and sister, she would like to start a support group in this region for chronic pain sufferers and their families, and understand exactly what each other is going through.
She only knows of one other woman with RSD in the Parry Sound and Muskoka area, but suspects there are others.
“Once you have it, you watch other people, how they are acting and reacting, you get some insight,” she said.