Scleroderma: Hard Word. Harder Disease.
There are few certainties about scleroderma — one of the most common rare diseases in Canada. The first symptoms are often in the fingers, but not always. Scleroderma can scar internal organs, harden skin, cause stiff joints, damage lungs and cause kidney failure, or not. It can be chronic, but sometimes, it can be fatal. We know it is a connective tissue disorder that results in excessive scar tissue accumulating in the skin. We also know there is no known cause and no cure.
The other thing we know is that our understanding of the disease is growing. Our ability to treat its symptoms is improving rapidly, as is our capacity to support people living with scleroderma.
That’s why Scleroderma Awareness Month is so important to the Scleroderma Society of Ontario. In June, across Canada and around the world, scleroderma organizations will hold events designed to raise awareness and raise funds to support research and services for people living with this “harder” disease.
In Ontario, the cornerstone of Scleroderma Awareness Month is the series of Walk, Ride or Run in the Park events in London, Hamilton, Ottawa and Toronto. The events are the Scleroderma Society of Ontario’s largest single fundraiser and provide resources for patient advocacy, education and research. The events also help spread the word and raise awareness of a disease that is too often misunderstood.
There is a wealth of information for patients, families and healthcare professionals at sclerodermaontario.ca and SclerodermaAware.org. This June, please take some time to learn more about scleroderma and support the Canadians who deal with the disease every day by joining in one of our Walk, Ride or Run in the Park events. The steps you take that day may be small steps for you, but they could mean everything to someone living with scleroderma.
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