June is Scleroderma Awareness Month: Spreading Rare Disease Awareness

According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month. While physical distancing as a result of the ongoing coronavirus/COVID-19 pandemic may keep some folks at home, the Scleroderma Foundation is making plans to organize several events to celebrate the event, including virtual fundraising walks in several different cities as part of the organization’s Stepping Out Campaign.

About Scleroderma

Scleroderma, which is also referred to as systemic sclerosis, describes a group of autoimmune diseases that can cause system-wide effects in the most severe cases. The mechanism of this disease is believed to be an autoimmune response in which the immune system mistakenly attacks body tissue. Some factors that may contribute to triggering the autoimmune response include mutations of the HLA genes and exposure to certain materials, such as certain solvents, white spirits, ketones, and silica. Symptoms are broad ranging and systemic, including kidney failure, erectile dysfunction, fatigue, stroke, headaches, facial pain, congestive heart failure, skin abnormalities, high blood pressure, chest pain, indigestion, and many more. Treatments are varied and depend on the symptoms, but most patients take medications in an attempt to suppress the autoimmune response. In severe cases, life expectancy is around 11 years from onset. To learn more about scleroderma, click here.

How to Get Involved

In the virtual walks, participants are permitted to engage in a variety of exercise activities, such as running, walking, or cycling while engaging with others on their social media. For a full list of events, click here. These virtual walks will also be happening in Canada, coordinated by Scleroderma Canada. Canadian participants are encouraged to share photos using the hashtag #scwalks2020. Submit your photos and videos to info@scleroderma.ca for the chance to win prizes.

The Scleroderma Foundation is also providing other resources for how to get involved. Check out their page about the awareness month here, and click here to learn about 30 different ways you can contribute. The foundation has also designated June 29th as a National Day of Action to call upon your congressional representatives and senators to support legislation that would help scleroderma patients. Register for the event here.

Another organization called Scleroderma Aware is providing an online toolkit full of fundraising tips and ideas to raise awareness, including resources like profile picture frames and cover photos. Click here to check it out.

So what are you waiting for? Don’t hesitate to get involved in this year’s Scleroderma Awareness Month.

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