The leading news source for information on scleroderma research – Scleroderma News (SclerodermaNews.com) – has just published an interview with Ed Harris, founder of the Scleroderma Education Project, about a research poster that he recently presented at the American Society for Apheresis (ASFA) annual meeting in early May, 2016. The poster was a review of all of the published research on the use of therapeutic plasma exchange (sometimes called TPE or plasmapheresis) to treat systemic scleroderma. Here is a link to the story: http://sclerodermanews.com/2016/05/17/tpe-for-scleroderma-interview-with-edward-harris/.
If you are not familiar with this research, here is a link to a post we did recently about the ASFA conference and the TPE review paper: https://sclerodermainfo.org/post-tpe-review/. The poster is being edited into research paper format for submission to a suitable research journal in the near future.
We wish to thank Scleroderma News for continuing to cover our efforts to advance scleroderma education and research.
As a 16 year scleroderma sufferer with CREST, I wait with baited breath and lots of prayer for a breakthrough. As of this date I have no internal involvement, but I pray that this research helps bring about more effective treatments. I am 58 years old, and could not imagine having to deal with this terrible disease as a much younger woman.
I am so thankful for Mr. Harris’ research,dogged determination and advocacy.
Ed Harris is a smart, well-informed citizen researcher whose tireless passion in getting to the bottom of important unanswered questions about systemic sclerosis puts him in an excellent position to find those answers. His hyperviscosity hypothesis about at least some of the pathogenesis of systemic sclerosis is an example. As he freely acknowledges, it may or may not prove to be true. But he knows how this question and others must be properly tested and he vigorously advocates for testing these propositions with the necessary rigor and transparency. Whether or not he ultimately proves to be correct does not detract from the fact that I think of him as the ‘Lorenzo’s Oil for Scleroderma”. We need more clear-headed citizen warriors like him.