Hi, I asked this question a while ago but I thought I would try again since it’s been a while to see if there was anyone else in this community who has these illnesses. Cystinosis and Fanconi syndrome I was diagnosed when I was around 2 years old,. basically the cystine cells attack the vital organs (in my case the kidneys and the thorax) I was on dialysis for 12 years before receiving a transplant last year. It would be great to get to chat with anyone who knows about it, or has the same disease.
Hope everyone’s being safe and doing well 😊
Transplant and BKV Realities
First Time Kindey Transplant 
Kidney transplant 23 years my gfr now is 13 percent but I want no dialysis.
How did you know you were losing your kidney? 
canker sore, low wbc and GI infection 
