Scleroderma News: New Guidelines Aim to Advance Plasma Exchange as Scleroderma Therapy

From Scleroderma News (SclerodermaNews.com), August 17, 2016: The Scleroderma Education Project (SclerodermaInfo.org) recently released guidelines for patients and doctors wishing to know more about therapeutic plasma exchange (TPE) as a treatment option for limited scleroderma. The guidelines are designed to facilitate data collection to support the launch of a randomized clinical trial, and follow the… Continue Reading

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Suggested Guidelines for Individual Trials of Therapeutic Plasma Exchange to Treat Systemic Scleroderma

Recently, two patients who are currently discussing therapeutic plasma exchange (TPE) with their physicians as a possible treatment option asked me for some information to give to their physicians that described the protocol that was used in the recently published case report (Harris et al. 2016) titled “Successful Long-Term (22 Year) Treatment of Limited Scleroderma… Continue Reading

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Scleroderma News: Alternative Scleroderma Theory Advanced by 22 Years of Therapeutic Plasma Exchange

From Scleroderma News (SclerodermaNews.com), July 21, 2016: A case study, describing the successful treatment of a scleroderma patient with repeated therapeutic plasma exchange (TPE) for more than 22 years, presents an alternative theory about the beneficial effects of the treatment and the disease itself. The study “Successful long-term (22 Year) treatment of limited scleroderma using therapeutic plasma exchange:… Continue Reading

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“Diffuse”? “Limited”? “Overlap”? “Sine”?: Know Your Terms and Your Antibody Type

(This post is focused on systemic forms of scleroderma only. For a discussion on non-systemic forms, for example, linear scleroderma or morphea, or scleroderma-like disorders, see the Differential Diagnosis section of the Scleroderma FAQ.) 25 Years Ago The names used for referring to the scleroderma family of disease are very confusing for a number of… Continue Reading

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Scleroderma News Story: “Therapeutic Plasma Exchange and Scleroderma: An Exclusive Interview with Edward Harris”

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… Continue Reading

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Scleroderma Education Project Just Featured in “Scleroderma News”!

The leading news source for information on scleroderma research – Scleroderma News (SclerodermaNews.com) – has just published an article about the Scleroderma Education Project, including coverage of our recent educational article titled “Yes, You DO Have Internal Organ Damage, But…”.  Scleroderma News has also recognized the Scleroderma Education Project as a “trusted source of information about scleroderma”.  Here is… Continue Reading

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Yes, You DO Have Internal Organ Involvement, But…

(Please note – this article was reviewed for accuracy by two physicians, one of whom is a top scleroderma expert.) This article was prompted by a post in one of the scleroderma focused Facebook support groups that I am active in.  The poster indicated that she had read an article that said that internal organ… Continue Reading

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National Public Radio (NPR) Report on the Long-Term Dangers of Heartburn Medicines

This morning, NPR did a report on dangers associated with long-term use of proton pump inhibitors such as Prilosec (omeprazole) and also the fact that it is nearly impossible to get off them.  Here is a link to the article on their website: http://www.npr.org/sections/health-shots/2016/02/15/465279217/popular-heartburn-pills-can-be-hard-to-stop-and-may-be-risky.  This is a very important story but people with systemic scleroderma… Continue Reading

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