Did you have (do you have) a rare disease? Share your stories and raise awareness! #MoreYouKnow #ShareYourStripes
I do! I was transplanted for Glycogen Storage Disease, which is a rare disease where the liver is missing the enzyme needed to turn glycogen into glucose. My transplanted liver obviously has that enzyme, so i’m no longer symptomatic but I am still considered as having glycogen storage disease, just treated through transplantation
Congratulations to you. So glad u r doing well. So many liver diseases that transplant can indeed help. So interesting.
Well, I don't have a rare disease but my son does. That's what led to us being a part of the liver transplant world. He was born with Biliary Atresia which basically means he was born without a functioning liver that only became worse after birth, shrivaling up his gall bladder and leading to the bile not being able to drain from his liver. It's so sad to see those little guys have to fight through illness and disease so early in life.