Thursday, January 10, 2019

Don't look at the photos

In the process of writing about my graft vs. host disease of the skin for the Health Union website, I  had to cover my eyes when scrolling through the photos in the review of Cutaneous Manifestations of Chronic Graft-versus-Host Disease.

It shows me that many patients have it much worse than I do. There are 16 possible manifestations. I had to look up the meaning of some of the words to find out if they apply to me. 

For example, erythema, basically reddened skin. Yes, I have it, mostly on my hands, and in patches on my legs.


Scleroderma – thickening and hardening of the skin – one of the first signs, much better after treatment with the light therapy, or extracorporeal photopheresis. 

Rippled or cellulite-like fibrosis – "Skin appears to be rippled in areas rich in adipose tissue-volar arms, abdomen and lateral thighs; caused by fibrosis of septae of subcutaneous fat." OK, so fibrosis is the thickening and scarring of connective tissue. Some words, you look up, and if you're a layperson, you still don't know what they mean. In summary this is the rippling and dimpling that I've complained about. It may not get much better. But it's getting softer, yay!

Positive prayer sign – "Characterized by patient inability to completely close gaps between opposed palms and fingers when pressing their hands together in prayer’s position, or acute limitation of wrist dorsiflexion."

Well, I can close my hands together but I have limited flexibility in my wrists, especially on my left side, leading to my hand making a cup instead of lying flat during yoga. Also my wrists hurt when I try to place my hands flat on the floor. This does NOT seem to be getting better, and in my quest to accumulate more and more specialists, I am going to go see a hand therapist. My dermatologist set me up with one in Boston. I called to ask if specialists do the same thing around here. The answer is yes. I haven't made the call, but I plan to...when I get around to it.

Sometimes the list of things I need to do just to maintain myself get so long it gets me down.

1 comment:

Anonymous said...

Thank you for sharing