From Scleroderma Patient to Published Author in Scleroderma
I was diagnosed with limited scleroderma in January 1990. Since then I have become a scleroderma patient educator and website author and am now a published scleroderma author.
My story begins in 1985 when I noticed my first Raynaud's symptoms. Over the next several years my Raynaud's got steadily worse and I developed chronic heartburn. Eventually this lead to my being diagnosed with limited systemic scleroderma in January 1990. My symptoms progressed in a typical manner for limited scleroderma and by 1993 I had very bad Raynaud's, severe GERD that was not controllable by medication, was chronically chilled, and had early lung damage.
Everything that has happened since is a result of not being willing to accept my doctors comments that there was really nothing that could be done but try to deal with symptoms as they arose, and by the way "lung transplants are getting better all the time". Here is my story, in brief:
My wife and I saw the movie "Lorenzo's Oil" and 1992 and I was inspired to try to see if there were any research-based treatment approaches that my doctors were not aware of. I live in Madison, WI, and as my wife is a physician, I had ready access to the University of Wisconsin Medical School library. But this was before the Internet, and trying to do research then meant looking through card catalogs and going through volumes of rheumatology journals one at a time, a nearly hopeless task.
Everything changed where a chance meeting on an airplane flight lead to an amazing "pay it forward" story. I was traveling on a business trip in early 1993 and the gentleman I was sitting next to was the CEO of a software company that sold Medline on CD-ROMs to libraries and research centers for many thousands of dollars. I was also the CEO of a software company at that time and after I ended up sharing my story with him, he offered to send me a free copy of Medline, which he did about a week later. This incredibly generous gift allowed me to finally do the research that I wanted to do, found some little-known research published in the Netherlands in the 1980s and early 90s, and ultimately formulated a novel disease pathogenesis model and treatment approach that I was able to convince my team of physicians to try, beginning in November 1993. I just tracked him down in England last year and shared with him everything that resulted from his generous gift back in 1993.
The treatment approach worked, my symptoms reversed over the next three years, and now more than 22 years later, with continuing regular treatments, I remain in full remission and in excellent health at age 68. My case report was just featured at a medical conference (more about that in a bit).
In 1996 I launched the first major website for scleroderma patients that featured research-based information about systemic scleroderma. That website has now evolved into the Scleroderma Education Project (located at SclerodermaInfo.org) and is a major, up-to-date source of research-based information about scleroderma diagnosis and treatment, written to be understandable by scleroderma patients without a medical background. The website is heavily trafficked and has been visited by more than 16,000 people from 126 countries over the past 9 months alone.
Over the past 20 years I have also become a patient advocate and (unpaid) consultant who spends several hours a day working with patients around the world helping to educate them about diagnosis and other issues so that they can work more effectively with their team of physicians. I am an active member of about 10 Facebook scleroderma-support groups as well as Inspire, the support community sponsored by the Scleroderma Foundation.
I am now a published author of scleroderma research and am honored to have a number of physicians and researchers working with me on a series of research papers, starting with my own case report that was just presented at a medical conference in October 2015. This case report was also recently featured as a major news story in Scleroderma News in December 2015: http://sclerodermanews.com/2015/12/03/scleroderma-patient-long-term-remission-tpe-treatment. My colleagues and I just had another paper accepted for a medical conference in May 2016. I will be presenting the poster at that conference. We are now working on additional papers focused on advancing research that may lead to new treatment approaches that will prevent disease symptoms from ever developing, potentially turning this often fatal disease into one that is manageable, like diabetes or HIV.
While I would not wish scleroderma on my worst enemy, for me it has lead a remarkable story of personal growth. I am now spending much of my time during "retirement" on working to developing treatments for this terrible family of diseases.