According to a story from Scleroderma News, June is recognized as Scleroderma Awareness Month, a time for spreading awareness about scleroderma among the general public and in the medical field. This year, this rare patient community is hard at work with multiple campaigns to help promote awareness. The National Scleroderma Foundation, for instance, has released a video calling on viewers to ‘know scleroderma‘ this year. Click here to check it out.
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.
A Community Takes Action
Meanwhile, the Scleroderma Research Foundation held its Collaborating for a Cure online forum for patients at the beginning of the month. This organization has also started a #SayScleroderma hashtag campaign on social media, which first took off last year.
Scleroderma and Raynaud’s UK is also hosting a fundraising event this month called Walk for SRUK, which is hoping to raise £19,000 for the community to represent the 19,000 patients that live in the UK.
June 29 is also recognized as World Scleroderma Day. This date coincides with the day that Swiss artist Paul Klee, who lived with systemic scleroderma, passed away. Click here to learn more about it. There’s a lot going on this month to help spread awareness about this rare disease, so don’t hesitate to get involved and play your part.
