Last Wednesday, the Scleroderma Foundation announced a research breakthrough in the search for a scleroderma cure. A team of University of Pittsburgh Medical School researchers, including the Foundation’s board vice chair Dr. Carol Feghali-Bostwick, has discovered a peptide that blocks skin and lung fibrosis.

The so-called E4 peptide was discovered serendipitously when the team was investigating agents that promote fibrosis—thickening of connective tissue. This particular peptide (a chain of amino acids that make up part of a protein) blocks fibrosis in mice. Testing the discovery further, the investigators found that E4 also reduces fibrosis in human skin samples maintained in the lab.

Exciting news, since lung fibrosis is the leading cause of death in patients with scleroderma, and excessive skin thickening is at the core of the disease process. The discovery of E4 is not a cure, but an important step forward in that quest.

I’ve been thinking about this announcement all week and wondering: Is it really possible that a cure for this disease could be found in my lifetime?

It’s an idea that I have not let myself entertain, for decades. Scleroderma is disease that affects about 300,000 people in the U.S., just under one percent of our nation’s population. It seems like a lot of people to me, but not enough to attract significant research dollars, compared to a killer like cancer.

According to language in the Scleroderma Research and Awareness Bill (HR2408 and  S1545), which has been pending in Congress since 2009, NIH funding of scleroderma research was then about $20 million annually. The Scleroderma Foundation and Scleroderma Research Foundation each raise and distribute a little more than $1 million for research each year. So, that’s around $22 million, give or take. Just about the same as Red Sox first baseman Adrian Gonzalez will earn this year.

Would that our nation made health as high a priority as sports franchises. But I digress.

For my own part, I’ve tried to help the search for a scleroderma cure by participating in studies ever since I was diagnosed 25 years ago by Dr. Virginia Steen, a leading researcher in the field, then at the University of Pittsburgh, now at Georgetown University.

Data about my blood samples are in research databases around the country. I contributed a tissue sample from my placenta when I gave birth to Emily. I’ve helped to test new drugs for Raynaud’s (I think I had the placebo) and have allowed images of my hands, pre- and post-surgery, to be published in medical journals.

I’ve also explained my case history to numerous rheumatology fellows at Boston Medical Center over the years, and I’ve talked to classes of second-year BMC med students, helping them to learn how to diagnose scleroderma.

I don’t often fit the criteria for research trials at this point, because I’ve had the disease for so long. And I don’t participate in any research that involves procedures that sound painful or too risky. I’ll leave those to someone braver. But I’m glad to help when I can. It’s the least I can do to try to find a cure and improve the chances that some new patient suffering from the disease will be diagnosed sooner, with better odds of survival.

As for the E4 peptide discovery, all I can do is hope that the progress of my disease continues slowly enough, and that the research proceeds apace, so that maybe, just maybe, as my health gets worse, there will be better treatment options available when I need them.

And when I finish this post, I’m going to make a donation to both the Scleroderma Foundation and the Scleroderma Research Foundation. I don’t really care who claims credit for the next breakthrough. I just want us to get there, already.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at


  1. Hi Evelyn,
    I just found your website and have read all of your postings. Your story is also my story and you write about it so well. So good to know someone else gets it. I even have a hula finger (actually several) and a golden retriever named Lily.

  2. Thanks, Cathy! Nice to meet another kindred spirit. Ginger says hello to Lily!

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