In this installment of our spotlight series, we’ll get to know Ed Harris of the Scleroderma Education Project.
When Ed originally contacted me regarding some SEO work, his experience with an illness struck a cord with my own history. As you’ll learn below, Ed suffered — and conquered — a disease called scleroderma, which was supposed to be untreatable.
I could relate, as I was once told I’d be on medication for the rest of my life because I suffered from Crohn’s disease. In both our cases, we proved the doctors wrong.
To put it mildly, I was very excited to work with Ed and help him connect with as many people as possible who suffer from scleroderma.
Let’s learn more from Ed …
Who Are You?
My name is Ed Harris. I was diagnosed with a very rare disease in early 1990 which is to this day considered untreatable. In 1993 I managed to locate some little known research that lead to an experimental treatment that put my disease into full remission and I remain in excellent health more than 22 years later.
What Do You Do?
In 1996 (in the early days of the Internet), there was basically no solid research-based information available on this disease, so I created a website that provided detailed but understandable information to patients around the world. While there are now a number of excellent sources of information about this disease on the Internet, the information on most websites tends to be either fairly limited and basic or alternatively is very technical and not understandable by most patients. My website has now evolved to be the single most comprehensive source of up-to-date, research-based information available on this disease, written in a manner to be easily comprehended by patients with no medical background.
Why Do You Love Doing It?
Over the past nine months alone, more than 16,000 people from 127 countries have accessed my website and increased their understanding of the disease, allowing them to work more effectively with their team of physicians. With the recent SEO work performed by Cuppa SEO, search traffic has doubled and I expect that many more people will access the website over the next nine months. I have also made the transition from patient back in 1990 to educator/patient advocate and am now a disease expert and published researcher, working with other researchers on a new approach to treating this disease that may lead to more effective and safer treatments.
How Does It Help People?
The information on my website helps patients get diagnosed more rapidly and more accurately and provides a place where they can learn about potential treatments and side effects so they can make informed decisions with their physicians about the best possible care for their individual situation. I also work with patients one-on-one, answering questions that I have the expertise to answer, also helping to work with their physicians more effectively.
Want to learn more?
Visit the Scleroderma Education Project for more info about the disease an treatment options. You can also make a donation to assist with helping sufferers of scleroderma worldwide.