Hello, I am trying to find an online support group for people living with Tyrosinemia. I've looked all over and am not able to find one because it is so rare. I found this board through a google search and was hoping someone could help me. I was born with this and for 13 years of my life, lived on a strict no protine diet and eventually ended up with liver cancer and needed a liver transplant. This has been 18 years ago. This past weekend, I emailed an old doctor of mine who treated me and updated him on how I was doing. We talked back and forth and he said I should come in to be checked that I am not cured totally of it that my kidneys could still make the toxins. I was always under the impression that I was cured so I was shocked and upset to hear this news. I am going on the 6th to see my transplant clinic and get labs there and have it arranged to have this test done at the same time to check for those toxins.

Thanks, Terri