June 29th is recognized around the world as being World Scleroderma Day. This date is an opportunity for anybody with an interest in scleroderma (systemic sclerosis) to join together as a single, united global voice, to shine the spotlight on this little-understood rare disease. Due to the present unwelcome…
Two years ago, a 12-year-old girl named Carly Bankovich was playing basketball when she felt a strange sensation and knew something wasn’t right. She just didn’t know what. “My hands were not moving like they should have been,” remembers Carly. “The skin on my arms was hard…
In this 2010 Scleroderma Foundation video, find out more about their work with Chris Harrison, host of ABC’s “The Bachelor.” “The Scleroderma Foundation: Support, Education, and Research. This is our trifold mission, so please, get involved today” Learn more about scleroderma here: http://bit.ly/learnscleroderma…
In this 2010 Scleroderma Research Foundation video titled “Moving Forward”, watch patients share their struggles with scleroderma and the important role of medical research in the search for a cure. Learn more about scleroderma here: http://bit.ly/learnscleroderma …
In this Scleroderma Foundation video, learn more about the 2016 National Patient Education Conference centered around the theme: “Unmask the Cure”. Save the date on your calendar: July 29 – 31 2016 in New Orleans, Louisiana. Learn more about scleroderma here: http://bit.ly/learnscleroderma…
According to the Scleroderma Foundation, here’s a list of some frequently asked questions about scleroderma. What is scleroderma? How serious is it? How can scleroderma be diagnosed? What are the causes of scleroderma? Who usually develops scleroderma? When? Is there a treatment for scleroderma? What is it? Are people…
According to the John Hopkins Scleroderma Center, scleroderma has a big impact on your body, both emotional and physical. There are a number of the parts of your body that may be directly or indirectly affected by scleroderma and should be watched. Since scleroderma varies from people to people,…
Alice, without doubt, is one of the bravest pioneering patients of the global Ssc community, and whose story personalizes how devastating and aggressive this diagnosis can be, but how it can be overcome. Alice underwent a double lung transplant in 2012, and has been taking part in marathons since 2014.
In this Scleroderma Foundation video, learn more about what it’s like living with scleroderma. This video features actor Jason Alexander; Football Hall of Famer Barry Sanders; actor and comedian Mark Teich; author and personality Mitch Albom, and scleroderma patients. “The one thing I would change with my Scleroderma would…
According to the Mayo Clinic, preparing a list of doubts, fears and questions you have can help you during your doctor’s appointment. Here are some questions to keep in mind: What is the most probable cause of my symptoms? Are there other possible causes? What other symptoms should…
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