In 1995, when the Internet was in its infancy and there was essentially no useful information about scleroderma available online for patients and their families, I wrote and published the first version of a document called the Scleroderma FAQ™. The Scleroderma FAQ is a comprehensive, detailed, unbiased, research-based document that incorporates the latest in medical research but is written in a manner that can be understood by scleroderma patients so they can work more effectively with their physicians to make informed care decisions.
When doing the research needed to do an update to the Scleroderma FAQ in late 2013, it quickly became clear to me that there was a need for additional patient education information – in particular, information that could help patients get quickly and correctly diagnosed and also make the most effective use of their visits with their physicians. This led to my writing a companion document to the FAQ titled the Guide for New and Future Patients. The Guide provides a basic overview of scleroderma but also focuses on diagnosis issues and getting the most from doctor visits. It also contains information to help the patient’s family and friends better understand what someone with scleroderma is going through.
I also started to write a series of additional Technical Articles that explore topics in more depth or cover topics that are beyond the patient education focus of the FAQ and the Guide. All of this eventually lead to my launching in July 2014 a completely redesigned Scleroderma Education Project™ website, located at SclerodermaInfo.org. New articles and blog posts are constantly being added to the website, including some articles that are focused on educating physicians as well as patients. The Scleroderma Education Project is now a trusted source of information about scleroderma that now has heavy and growing traffic from around the world, including visits from more than 37,000 individuals in 164 countries during the past six months. The Guide for New and Future Patients is also available in Spanish.
The Scleroderma Education Project is classified as a 501(c)(3) tax-exempt organization by the United States Internal Revenue Service.
- Education – The primary focus of the Scleroderma Education Project remains education. While most of the information on the website is written to educate patients, we now have some articles that are focused on educating physicians (for example, an article that explains how to do scleroderma ANA and antibody testing correctly). Many of our blog posts and articles are designed to explain complex topics, for example, the new 2013 ACR/EULAR Classification Criteria in simple to understand terms or to discuss new research that explores the rare cases where patients test negative for autoantibodies.
- Patient Support – In order for patients to be able to work more effectively with their team of physicians, they themselves need to be better educated about their disease. Physicians rarely have time to explain and discuss complex lab results such as ANA and antibody testing, issues with diagnosis, treatment options tradeoffs, etc., during routine office visits. As a result, patients now frequently turn to online discussion/support forums through Facebook and Inspire (run by the Scleroderma Foundation).One of the activities of the Scleroderma Education Project is to work with individual patients through these online support forums but also through direct communication via email and occasionally phone calls. Patients are never offered medical advice or specific treatment suggestions, but we are often able to help patients to better understand their lab results as well as potential treatment options so they can then ask better questions and work more effectively with their physicians on their own individual care decisions.As a side note, monitoring online patient support forums often leads to new articles or blog posts. For example, a recent post titled “Yes, you DO Have Internal Organ Involvement, but…” was written based on a question posted on a Facebook support group asking about internal organ involvement.
- Research – In 1993, based on a comprehensive review of all of the published research literature on systemic scleroderma, I developed a new disease model for systemic scleroderma disease pathogenesis based on research that shows that most patients with scleroderma have blood hyperviscosity (the blood is “thicker” than usual). Based on that research, I was able to figure out a treatment approach that was able to reverse my own disease symptoms and has kept me in excellent health for more than 20 years. I am now working with a group of researchers on advancing research to test this novel disease model.
- As part of this effort, I presented my own case report at a medical conference in October 2015 and a full version of that case report is now published in the research journal Clinical Hemorheology and Microcirculation. The final manuscript version of the case report can be freely downloaded here: http://www.sclerodermainfo.org/pdf/CHM-Case-Report-Manuscript-US.pdf.
- In May 2016, I presented a poster at the American Society for Apheresis conference titled “Therapeutic Plasma Exchange for the Treatment of Systemic Scleroderma: A Comprehensive Review and Analysis”. Here is a link to download an extended version of the poster that was handed out at the conference: http://www.sclerodermainfo.org/pdf/ASFA-Handout-US.pdf. This paper will be submitted for publication in early 2017.
- In November 2016, I presented a poster at the American College of Rheumatology annual meeting titled “Therapeutic Plasma Exchange for the Treatment of Raynaud’s and Digital Ulcers in Systemic Sclerosis: A Systematic Review”. Here is a link to the published abstract: http://acrabstracts.org/abstract/therapeutic-plasma-exchange-for-the-treatment-of-raynauds-and-digital-ulcers-in-systemic-sclerosis-a-systematic-review/. A more detailed handout can be downloaded here: http://sclerodermainfo.org/pdf/ACR-Handout-US.pdf.
Edward S Harris
Susan E. Kwolkoski
Director of Communications
Medical Advisory Board
Barry Farkas MD MPH
Judian H. Smith MD
Miroslav Malkovsky MD PhD
Research Advisory Board
Herbert J Meiselman ScD, Keck School of Medicine, University of Southern California
Patrick M Moriarty MD, University of Kansas Medical Center
Allan Metzger MD, RDL Reference Laboratory, Los Angeles, CA
Miroslav Malkovsky MD PhD, University of Wisconsin, Madison, WI
For additional information, contact:
Ed Harris, Fellow, Dept. of Medical Microbiology and Immunology, University of Wisconsin, Madison, WI. Email: firstname.lastname@example.org. CEO, Scleroderma Education Project. Email: email@example.com.
My personal backstory: http://sclerodermainfo.org/pdf/Ed.pdf.
|7/23/2014||Original website launch date|
|9/16/2014||Added symptom photos to Symptoms page of Scleroderma FAQ|