2019: Key Treatment Advances, Update on SEP Research, Last chance to Donate!
2019 has been a year of significant progress in systemic sclerosis (SSc) research and treatments. Here are some of the highlight Key Treatment Advances First Scleroderma Specific Drug Approved: The FDA approved the first drug specifically for treating systemic sclerosis - OFEV® (nintedanib). OFEV is approved to treat scleroderma-related interstitial lung disease (ILD) and has been shown to slow the rate of decline of lung functioning compared to placebo. (You may not be aware that [...]
The Holiday Season is Coming: Help the Scleroderma Education Project!
As you may know, the Scleroderma Education Project is a 501c3 non-profit organization, so as you think about charitable giving for the year, please consider an end-of-year donation to the Scleroderma Education Project. Since we are an all-volunteer organization, every tax-deductible dollar that you donate goes directly to support our educational and research goals. Clear here to reach our donation page: https://sclerodermainfo.org/donate/ However, as we approach Black Friday and the holiday season, you also have a [...]
News Story: Link Between Elevated Whole Blood Viscosity and Pulmonary Artery Hypertension
Scleroderma News just published a story about a new research paper in Clinical Rheumatology that shows a link between abnormal whole blood viscosity (WBV) and pulmonary artery hypertension (PAH): Scleroderma News: Abnormal WBV and PAH Linked. The story summarizes the findings of the paper and ends with this: "The team thinks the results provide further evidence that changes in blood proprieties can contribute to the progression of SSc, and the development of associated complications. Therefore, the use of alternative [...]
Therapeutic Plasma Exchange: An Oil Change for Your Body?
Recently, in a scleroderma focused Facebook patient support group, a newly diagnosed patient posted this comment after her initial doctor visit: "…he told me that all they can do is chemotherapy when it starts taking over my body??? Really, is that it? Nothing they can do?" Among many other supportive and helpful comments from other patients, one patient mentioned therapeutic plasma exchange (TPE) and described it as follows: "They basically take out the plasma every [...]