The internet can seem like an endless portal that is easy to get lost in. Almost every topic, no matter how rare or obscure, has an article, blog, or website to follow. It can be tricky to determine which resources are trustworthy and which ones are bogus.
To research scleroderma, a lot of good, and bad, information exists on the web. I’ve compiled a list of websites, blogs, and social media groups that might help scleroderma patients in their search for useful information about different aspects of the disease.
This is the main go-to hub for information about resources, specialty centers, doctors, local support groups, and annual walkathons. The Scleroderma Foundation is a nationally accredited 501(c)(3) nonprofit organization. Its mission is to raise funding and awareness for scleroderma.
Inspire is an online community for patients of many different diseases to connect with each other through open forum discussions. It’s particularly helpful for those who have rare conditions and who want to read about personal experiences relevant to their own. A member can post a discussion, question, or search within the disease for a specific topic.
This news site provides a streamline of scleroderma-related news about an array of topics, from innovative treatments to personal first-hand experiences.
Founded by the late Sharon Monsky, who had scleroderma for 18 years, this foundation continues to raise millions of dollars for research through annual star-studded galas. The website provides detailed descriptions about scleroderma and ways to get involved in fundraising campaigns.
Christy McCaffrey lost her mother to scleroderma in 2009, only a few months after she was diagnosed. Her loss inspired her to share the stories of patients around the world through the power of the documentary film “Beneath The Surface.”
Chanel White is a patient advocate who has been through many trials and tribulations of scleroderma. Her blog gives a raw look at what it’s like to live with severe gastrointestinal problems and includes an account of her journey through a stem cell transplant.
Attempting to navigate through scleroderma without an outlet was frustrating for patient columnist Jessica Massengale (me). I created Scleroderma Strong to educate the general public on what it was like to live with scleroderma while encouraging other patients not to hide their scars.
Many patients are turning to stem cell transplant to try to inhibit scleroderma’s progression. This private Facebook group is an informative forum for individuals who have had the transplant to share their experiences, both good and bad.
Trusted websites are essential when making decisions about one’s health. Gathering information, researching, and contacting others can help steer you more easily along scleroderma’s winding roads.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.