I’m in the same situation as you are - I have skin GVHD on my stomach. It’s under control now, and I give Jakafi all the credit.

I agree that GVHD is so unpredictable. I find that intense stress sometimes triggers it for me. It can affect my hands where I can’t even hold a pen or make a fist.

My family knows that I have ups and downs, and supports me during those rough days. Distant friends and acquaintances are surprised that 7 years after the transplant I am still dealing with the aftermath. I get reactions at work sometimes and I can see it in my coworkers eyes, like they question whether I am exaggerating. I look completely healthy to them. Sometimes I feel like it’s not even worth it having to explain my condition to them. I just keep it to my self and act like everything is fine.