What is scleroderma?
Scleroderma is a rare, progressive, and chronic autoimmune connective tissue disorder that causes excess collagen accumulation.
The word scleroderma literally means ‘hard skin’ and is derived from the Greek words “sclerosis” meaning hardness and “derma” meaning skin. It is this thickening of the skin that is the most characteristic feature of scleroderma. Less visible, but of major importance, are the vascular lesions that occur in small blood vessels and which may affect major organs.
Whether you have scleroderma, care for someone with scleroderma, or are a professional involved in scleroderma research or treatments in Atlantic Canada, we are here to support you.
Scleroderma is a rare disease affecting ~40,000 Canadians.
Diagnosis can be alarming. If you were recently diagnosed with scleroderma, we welcome you to join our online Scleroderma Atlantic community. It is a helpful place to share experiences, learn from others, and know that you are not alone.
We encourage you to also visit our resources page to find reliable sources for learning about your newly diagnosed disease.
Though scleroderma has no cure, there is a wide variety of treatments available. Treatments options and results can vary significantly from patient to patient.
Throughout your journey with scleroderma, you will most likely be followed and treated by multiple specialists. We recommend that you discuss all of the treatment options available to you with your specialists.
Annual tests are essential to monitor the progression of your condition. All scleroderma patients are entitled and should receive annual testing.
If annual tests are not being regularly performed speak to your doctor. Some doctors will have more expertise than others.
Don’t be afraid to ask – these annual tests are recommended and should be performed routinely.
Resources and Support
Scleroderma Atlantic is committed to being a reliable source of information and resources related to scleroderma.
Our resources include informative webinars, patient guides, informational documents and links.
We encourage you to bookmark and continue to refer to this resources page as it is updated regularly.