June 29 is World Scleroderma Day

On June 29, along with our partner organization Scleroderma Canada and many others, we mark World Scleroderma Day.

Scleroderma is a progressive autoimmune disorder that causes skin and internal organs to harden and thicken. It can cause scarring in the lungs and in the arteries of the lungs, affecting oxygen absorption. Each year about 1% of people with scleroderma develop pulmonary arterial hypertension, so there are many people with both scleroderma and pulmonary hypertension.

As often happens with pulmonary hypertension,

“Scleroderma has an additional challenge of being characterised by a wide range of signs and symptoms that can vary from patient to patient suffering from the same disease with many fairly common symptoms which can hide the underlying disease, which leads to misdiagnosis as knowledge within the medical and science sectors is still lacking.” (Scleroderma Society UK)

Living with both scleroderma and pulmonary hypertension can be challenging, but hearing from others can provide valuable information and reassurance. PHA Canada talked to patient Jeannie Tom to find out more about her experience with both scleroderma and pulmonary hypertension:

Jane Macleod is another patient who has shared her story about living with scleroderma and pulmonary arterial hypertension. Read her story here, or listen to her speak about her experiences on the PHAware podcast.

Because pulmonary hypertension can develop in association with scleroderma, people with scleroderma should get screened for pulmonary hypertension every year. Early detection can help people receive optimal care.

On World Scleroderma Day, we stand alongside everyone affected by scleroderma and pulmonary hypertension.