Emily Burke

Transplant update: After 27 days. I left the hospital… not feeling better yet, but improved from a few weeks ago…. Dr’s think the transplant went fine but that I now have a new disorder called Evan’s Syndrome…. it’s not really the best disease… but I guess time will tell how bad it affects me.

.

About 4-5% of people get Evans syndrome post transplant.

.

It’s discouraging because the transplant was supposed to be a “cure” for aplastic anemia and PNH. Which it seems like it did get rid of them. But now with Evans syndrome, the symptoms are basically the same as aplastic anemia and PNH…. so almost full circle except there’s no cure for Evans syndrome….

.

With aplastic anemia and pnh my body wasn’t making blood and it was forming blood clots. With Evans syndrome my body is destroying the blood that is made and it’s forming blood clots….

.

But they say when you get one autoimmune disorder, you tend to get a bunch.

.

The journey continues, I guess. I appreciate all of the positive vibes you can send my way.