Category Archives: News & Announcements

Blood Type Survey Part 2: Lupus, Rheumatoid Arthritis, Psoriasis, and Ankylosing Spondylitis

Do you have relatives or friends with lupus, rheumatoid arthritis, psoriasis, or ankylosing spondylitis?

Now is your chance to help advance some of our current research efforts. As many of you may remember, earlier this year the Scleroderma Education Project conducted an anonymous survey of blood types in patients with diagnosed systemic scleroderma. We received 924 responses to the survey over a six-week period, which is remarkably high for a rare disease like this. When we looked at the results, it was very clear that the distribution of blood types in patients with diagnosed systemic scleroderma is very different from overall population norms, at least in this self-report survey.

Understanding if this unexpected blood type distribution pattern is unique to scleroderma or also occurs in other autoimmune diseases is very important. When diseases have abnormal blood type distribution patterns, figuring out why this is the case can be very important in advancing research on new treatment approaches.

As the next step in this research, we are extending the survey to four other autoimmune diseases: lupus, rheumatoid arthritis, psoriasis, and ankylosing spondylitis. This is now an official Univ. of Wisconsin research study that has gone through IRB review. I am the lead investigator.  Here is a link to a detailed description of the study: Blood Type Survey Information

If you have relatives or know anyone formally diagnosed with one of these conditions, you can help. In order to take one of these surveys, you must have a formal diagnosis of the specific disease AND know your blood type (A+, B+, AB+, O+, A-, B-, AB-, O-). Often people can find out their blood type by calling their doctors office (especially women who have gone through at least one pregnancy).

To make it easy for people to take the survey, this page contains links to each of the four surveys: http://sclerodermainfo.org/blood-type-study/. Or, just tell people to go to the Scleroderma Education Project website at SclerodermaInfo.org and click the link in bright red type at the top of the page and it will take you directly to this page.

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The Scleroderma Education Project is Expanding Our Mission

Our Mission: Education Since 1995 my focus has been on providing comprehensive, up-to-date, research-based information on systemic scleroderma diagnosis and treatment written in a language that patients can readily understand.  It is my strong belief that patients who are thoroughly educated about their disease can work more effectively with their team of physicians to make… Continue Reading

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Revised: “Scleroderma News” Follow-Up Interview About Recent ACR Research Poster on TPE to Treat Raynaud’s and Digital Ulcers

(Note: the link to the article in Scleroderma News in the earlier version of this post did not work correctly in some browsers.  More information on how to locate the article is included in this revised post.) Scleroderma News just released a follow-up interview with me on the research poster “Therapeutic Plasma Exchange for the Treatment of… Continue Reading

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Scleroderma News: Therapeutic Plasma Exchange May Be an Effective Treatment for Raynaud’s and Digital Ulcers in Scleroderma

From Scleroderma News (SclerodermaNews.com), October 21, 2016: “An overview of published studies exploring the use of therapeutic plasma exchange (TPE) in scleroderma patients indicated that the treatment improved Raynaud’s phenomenon and digital ulcers. Findings also showed that TPE made blood less viscous, improving blood flow and preventing blood vessels from becoming blocked.”  The abstract, published in Arthritis and Rheumatology, can… Continue Reading

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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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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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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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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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