Ray of Hope

Nothing like starting the new year with some good news about scleroderma research. In my email box last week, I found this item in the Scleroderma Research Foundation’s monthly eNewsletter (12-30-13):

Researchers Prevent and Reverse Mice Fibrosis in a Mouse Model of Stiff Skin Syndrome; Study Shows Promise for Scleroderma

I read on, heart quickening:

Dr. Hal Dietz and his team at The Johns Hopkins University have made a key discovery that may have broad implications for future scleroderma therapy. In a report in the November 7, 2013, print issue of the premier scientific journal, Nature, the researchers demonstrated that integrin-modulating agents (integrins are molecular receptors that mediate the attachment between a cell and its surroundings) can stop fibrosis in a genetic mouse model of scleroderma-like skin and, more strikingly, that established fibrosis can actually be reversed by the same agents. The Scleroderma Research Foundation has supported the work for the past six years.

In other words, it may be possible, some day in the future, to reverse skin stiffening that is the cursed hallmark of scleroderma.

Here’s a bit more explanation from the same piece:

In the SSS mouse model and, seemingly, in scleroderma, there is a fundamental process that goes awry: cells in the skin lose the ability to attach to the extracellular matrix and to sense their surroundings. Those cells then become activated and stimulate an immune response that causes the surrounding cells to produce excessive amounts of collagen, resulting in fibrotic skin. What’s most exciting is that the Dietz lab discovered a strategy to suppress the abnormal activation of the immune cells. In doing so, they also found that they could not only prevent, but also reverse established skin fibrosis.

You can read the full news release here.

There is so much we still do not know about the causes of scleroderma and potential cures. But the Johns Hopkins study gives real hope that somehow, someday, this disease will have a cure. Maybe not in my lifetime, but, then, who knows?

Both the Scleroderma Research Foundation in San Francisco and the Scleroderma Foundation in Danvers, Massachusetts, raise and distribute millions to find a cure. But they need help. There is just not enough funding through the National Institutes of Health for the research that remains to be done. Scleroderma is simply not up there on the top ten list of diseases-that-affect-enough-people-to-get-more-funding.

So, it’s up to all of us who are affected by this mysterious and disabling disease, friends and loved ones, to help out. Please, even though it’s past December 31, consider making a contribution.

Thank you, and profound thanks to everyone at both Foundations for all you do to help those of us who continue to fight our daily battles, living with scleroderma.

Photo Credit: Kuzeytac (Hopefully Back) via Compfight cc

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 livingwithscleroderma.com.


  1. Hi Evelyn

    I came across your blog because I have something called sclerodermatous Graft versus Host Disease [GvHD]. It’s a complication of having a stem cell transplant for myeloma, a cancer of the plasma cells. I have just started treatment with extracorporeal photopheresis. I wonder if that is something you have considered or been suggested? I don’t know how/if it works with regular scleroderma, or if it’s more for GvHD. I know they’re hoping it will help with some lung GvHd too, so maybe it’s not relevant for you…?

    • Hi Jet,

      Thanks for sharing this. I have heard of extracorporeal photopheresis being used to treat scleroderma, but from what I understand, it is most effective in the early stages of the disease. See http://www.ncbi.nlm.nih.gov/pubmed/96211. This treatment modality for sceleroderma was introduced long after I got the disease, so it was never an option for me. I certainly hope that it helps you. Sounds like you’ve been through quite an ordeal. My best wishes for your full recovery!

  2. Jesse Evans says:

    Hi Evie,

    Thanks for the post, it sounds like pretty astounding news to me. I read the full summary, and although I don’t understand all the science, I certainly know that this type of breakthrough rarely includes a report of a successful treatment modality in the same article! Scientists keep getting more and more information about the intracellular bio chemical signaling that regulates normal function, and it holds great promise for the future. I’ll show this to Connie, I know she’ll be interested too.
    Cheers, Jesse

    • Thanks, Jesse. It is exciting news. I’m sure a real treatment modality is a long way off, but it is so encouraging that these scientists are beginning to crack the code. Hi to Connie!

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