If it's too hot, most of us can easily pour ourselves a cool glass of water. However, for Carroll Vapsva and Shirley Haslam, things aren't quite so simple.
Both women suffer from scleroderma, a progressive disease of the vascular and immune systems that causes the skin to harden. Those who suffer from the rare illness also experience poor circulation, skin discolouration, a hardening of internal organs, and difficulty with movement and swallowing.
Vapsva is forced to wear her wedding ring around her neck because it no longer fits her disease-ravaged finger.
Both women founded a Mississauga support group for people living with scleroderma. June is recognized as Scleroderma Awareness Month here in Canada.
Scleroderma, which is rarely fatal, affects about 300 people in Ontario and 1,500 in Canada. There is no cure for the disease, but with medication and exercise it can be managed.
The support group held a gala dinner earlier this year and were able to raise in excess of $30,000 for research and to raise awareness about the disease. The women are already planning next year's event and hope to double the number of people who attend.
Recently, Mississauga-Erindale MP Omar Alghabra read a declaration in the House of Commons formally recognizing June as Scleroderma Awareness Month. Haslam also travelled to Ottawa recently to meet with the Minister of Health Tony Clement's people to discuss the disease.
Meanwhile, the support group provides those living with the illness a place to discuss, among peers, their experiences, medication and treatments. The group meets about six times a year.
Vapsva and Haslam say the support group is also an excellent way to hear the latest news about the disease.
"Many people have scleroderma and many don't know they have it," said Haslam. "Our goal is to get the word out on the disease. Over the years, there hasn't been a great deal of research into it, but that's changing."
Added Vapsva, "At first, I was almost embarrassed to talk about it, but now when people ask I just say it's an illness called scleroderma."
For more information, visit www.sclerodermaontario.ca.
