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!

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

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!

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…?