The month of June is recognized as Scleroderma Awareness Month, a time for spreading awareness about the rare disease scleroderma in the medical community and among the general population. This year, the Scleroderma Foundation is encouraging people to participate in its Stepping Out to Cure Scleroderma campaign. This campaign consists of a combination of outdoor and virtual events that will help fundraise in support of the scleroderma community and research. In light of the ongoing COVID-19 pandemic, most events will be held virtually and participants are encouraged to conduct outdoor activities individually.
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.
Play Your Part
Virtual walk/runs have been scheduled throughout the month, and participants are encouraged to share their activity through engagement on their social media pages. Don’t forget to use the hashtags #SteppingOut and #StompOutScleroderma for your posts. Live streams are also planned to play a big part in fundraising, an adaptation first used last year as the pandemic raged.
The campaign will also coincide with World Scleroderma Awareness Day, which takes place on June 29. Local chapters of the foundation have a lot of leeway in planning their activities, and the Southern California chapter has come up with an interesting one: the icy hands challenge. In this challenge, the participant dunks their hands in ice water for at least 30 seconds. While perfectly safe, the challenge allows participants to experience the sensation of Raynaud’s phenomenon, a symptom of scleroderma in which a prickly, painful sensation occurs in the fingers and toes. In patients, this is the result of excess collagen growth, not cold exposure. The feeling is the result of the constriction of the blood vessels. Learn more about this challenge here.
You can also start your own virtual walk/run event if there isn’t one near you by reaching out to the foundation at 800-722-HOPE or firstname.lastname@example.org. To learn more about the Scleroderma Foundation’s activities, click here.
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