by Andru McCracken
When she was first diagnosed in 2011, Teressa Colosimo didn’t like to talk about it. She had been suffering for two years before she received a diagnosis, and it was a simple blood type that confirmed it. She had scleroderma.
“It took time to come out,” she said. But because people were so unfamiliar with scleroderma and unaware of the challenges that it presented for her and others, she decided it was time to raise awareness with her first fundraiser last year.
It is a rare disease. Only 16,000 people in Canada have it. It was one of the reasons Colosimo spent two years being diagnosed, a frustrating and scary experience.
“No one could see it, but something was happening,” she said.
Awareness
According to the Scleroderma Research Foundation, it is a chronic, degenerative disorder:
“Scleroderma can be disfiguring, debilitating and deadly…. The cause of scleroderma is unknown. It is not contagious. Some scleroderma cases have been linked to environmental factors such as silica dust, organic solvents, and certain drugs, though the cause for most cases of scleroderma is still not known.”
Scleroderma in Greek means “hard skin.” However, it also affects internal organs with life threatening consequences, according to the research foundation.
“I don’t feel like I am the outgoing person I used to be. I used to be very active, now it’s totally changed,” said Colosimo said. “I find with my speech, everything is tightening around my face, it feels like I am slurring.”
She said that she now has to think of words that she can pronounce as she is about to speak.
After being diagnosed Colosimo has seen a specialist at St Paul’s two times a year.
“They keep a good eye on all of us patients because we’re so different,” she said.
Fundraising for research
Colosimo was blown away by the support from the community at the 2nd Annual Scleroderma Walk for Awareness and Research was held on Saturday, June 30. Attendance doubled and two corporate sponsors stepped up with donations: Three Ranges Brewery and Tim Hortons.
“I love this community,” said Colosimo. “We made more than our goal of $2500.”
One of the speakers was Dr. Kevin Keen, a professor at University of Northern British Columbia’s Department of Mathematics and Statistics.
“He gave an awesome speech and talked about how 100% of the proceeds go to the St Paul’s Hospital,” she said.
Also present was councilor Sandy Salt, and Colosimo said she gave a heartwarming speech.
Keeping well
For Colosimo, staying positive is important and an amazing network of brothers, sisters, parents, her husband, daughter and her friends help her through.
“Every day is an experience and my family is just amazing because they put up with me,” she said.
“I smile everyday. I go for my walk everyday and just be thankful. There are people in worse situations. I’m just happy to be here because it could be a hell of a lot worse.”
