Category Archives: News & Announcements

Do You Know Anyone with Psoriasis? I need your help!

As many of you know, last Spring I conducted a survey looking at blood type distributions in patients with systemic scleroderma.  We managed to get 924 responses and the results were clearly different from the overall population.  If this finding is unique to scleroderma, it could give us better insight into why some people are more likely to get this rare disease.

In order to figure out if scleroderma is the only disease with this unexpected blood type distribution, we decided to do a formal, follow-on study through the University of Wisconsin in Madison, where I am a Fellow in the Dept. of Medicine.  The new study extends the identical, anonymous two-question survey  to four other autoimmune diseases:

  • Rheumatoid Arthritis
  • Lupus
  • Psoriasis
  • Ankylosing Spondylitis

This is an official UW study that has been review by the UW Institutional Review Board.  Here is a link to a document that describes the overall study in more detail: http://sclerodermainfo.org/pdf/Blood-Type-Survey-Details.pdf.

The new study requires a minimum of 1000 responses per disease.  This large number is to help overcome the inherent concerns about self-report surveys.  We have now completed and closed the Rheumatoid Arthritis and Lupus surveys.  The Psoriasis and Ankylosing Spondylitis surveys are still open.  However, we already have more than 1000 responses in the AS survey and that survey will close at the end of October.

The problem is the Psoriasis survey.  Psoriasis affects about 2% of the population world-wide but differs by country.  Because of that, I expected that this would be the easiest survey to complete but in reality, for reasons that I don’t fully understand, it has been one of the hardest.  Part of this may be from the fact that people with psoriatic arthritis are excluded from the survey, but that is only about 20% of people with psoriasis.

So here is how you can help.  There is a very good chance that you know one or more people who have psoriasis.  They may or may not know their blood type, of course, and that is a requirement to take the survey.  Could you please contact anyone you know who has psoriasis and ask them to take the survey if they know (or can find out) their blood type?  Here is a direct link to the Psoriasis survey:

Psoriasis Surveyhttps://www.surveymonkey.com/r/5LBBMQL

However, to make it easier, if you send someone to the Scleroderma Education Project website at SclerodermaInfo.org, there is a link to the surveys at the top of the page.

Once the last survey is closed, I will finally be able to post preliminary results of the scleroderma and other surveys here.  Right now, I am “blinded”, meaning I don’t know how any of the surveys are going, and I am very interested in seeing what the results are.  If they are interesting enough, we will get funding and do a follow-on study using patient records and looking at other variables including gender.

By the way, the Ankylosing Spondylitis survey is still open, so if you know anyone with AS, here is the link to that survey (it is also available through the Scleroderma Education Project home page link):

Ankylosing Spondylitis Surveyhttps://www.surveymonkey.com/r/DWHVWXZ

Please help.  The quicker we can close the last survey, the sooner you will see the results of all of the surveys and how they compare to the scleroderma survey.

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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… Continue Reading

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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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