Kick Cystinosis Butt

Not many people are aware of the disease called Fanconi Syndrome and Cystinosis but I have this ever so devilish disease that has no cure. Cystinosis is a metobolic disease in which amino acid cystine gets into the cells but has no transporter out. Because of this defect in transportation, the cell crystallizes causing early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles, and brain. This disease has caused me to not be able to live a normal life and has caused me to accumulate excessive medical expenses, travel expenses for dialysis plus doctors appointments in Rochester, NY, and living expenses. I’ve had two kidney transplants before the age of 25 and was told on July 12, 2018 that my second transplanted kidney was failing and I will have to go back on dialysis and may not be able to receive a 3rd transplant. I’ve tried my entire life to work through all my issues but am finding it harder and harder to go to work daily in order to make a living. I don’t usually ask for help but after this very depressing news, I am finding myself very overwhelmed with medical expenses, travel expenses, living expenses, and I am not sure where I may end up since the end result of this disease is death. If anyone is willing to help contribute in any way it would be greatly appreciated as I struggle through this thing called life.