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 😊