When you are diagnosed with a disease, it can be easy to believe the worst-case scenario
Artists think differently.
For Whitehorse singer-songwriter Nicole Edwards, scleroderma has been a part of her life for more than a decade.
The build-up of collagen and hardening of connective tissue has made her life more difficult. It has taken away her ability to play instruments, but not her ability to create.
“I don’t want to be looked at as, ‘Oh, there’s that sick musician.’ I want to be looked at as a musician,” she said.
Edwards has created a video outlining her journey and many musical successes, which is being played this weekend at the 2013 Scleroderma Canada Congress in Hamilton, Ontario.
The four-day event will bring together 250 people from across the country living with scleroderma and an international slate of doctors who specialize in the disease.
Edwards’s six-minute video will be part of the general assembly.
“It’s inspirational and motivational for other patients to realize that although there are challenges that come with this illness, they don’t have to steal your dreams,” said Maureen Sauve, president of the Scleroderma Society of Ontario and the Scleroderma Society of Canada.
“They can change your dreams but you can still contribute and maintain the things in your life with just a little bit of modification.”
Edwards was 29 years old when symptoms started appearing in 1999 and was officially diagnosed with scleroderma in 2001. There is no known cause or cure.
It’s been a struggle for Edwards to find the balance between acknowledging the autoimmune disease and not allowing it to define her life.
“I really struggle with not wanting scleroderma to be my identity. If I want to have a good quality of life, I’m so much more than my illness.”
But, in a relatively small community of people with the disease, Edwards said she is realizing that there is a role for her, especially when it comes to those who are newly diagnosed.
It is estimated that about 16,000 people in Canada have scleroderma, putting it at the upper end of the rare disease classification.
When she was first diagnosed, Edwards had never even heard of scleroderma, she said.
“What I feel good about is offering an alternative to the sad stories ... especially for people who are newly-diagnosed, I think there is an important role to play in providing hope for quality of life. Your chances of survival are higher if you have hope.”
Sauve believes Edwards’s story can provide that kind of hope. She points out that depression among people with scleroderma is higher than among the average population.
“(Edwards) could have sat around with her head in her hands and been depressed and had every reason or excuse for doing so,” she said.
“But instead she found away to modify her dream and make it realistic.”
The video created for the event received nearly 1,000 views online in the first three weeks it was posted - which is a lot of views for her, Edwards said.
“The video is going to be screened at the conference. But I’m finding that, the way the Internet is, a six-minute video really can reach people with scleroderma all over the world,” she said.
Living with illness is a theme of many of Edwards’s songs.
“As a musician I want to reach out to other people who might be able to relate to my experience or relate to what I am writing about,” she said.
For the month of September, 20 per cent of all digital sales of Edwards’s music will go to the Scleroderma Society of Canada
The video created for this weekend’s event and information of Edwards’s music can be found at www.nicoleedwardsmusic.com
Contact Ashley Joannou at