So basically i was born with a coloboma in my right eye, making it blind since birth. I thought that was all it was and besides that, i was completely normal.

But when i was 17, i was suddenly diagnosed with stage 5 kidney failure out of nowhere. No one expected it as i was an athlete and showed no signs of having a failed kidney. The doctor pointed out that i had smaller than average kidneys (kidney hypoplasia i assume) and that the scarring implied that it was a chronic illness. No one knew what caused my kidneys to fail, not even the doctors knew. So i want home and did some research online and found out about Renal Coloboma (Papillorenal Syndrome), where both the eyes and the kidneys are affected since birth. Im not a medical professional and so its not confirmed that i have this specific disease. However, I've been healthy my entire life and did not do anything to suggest a cause for my kidneys to fail, so my logical conclusion is that given the chronic nature of scarring on my kidneys, i think i do have renal coloboma.

I recently got a kidney transplant and i'm back to health now so thats really good. But my question is, since my country doesn't seem to have anything at all on this disease and most of the info i found came form the US, is there anyone who has this particular illness or anyone who knows anything about this illness they can tell me about? I read that it is genetically passed on but am not sure.

Thanks in advance to anyone who can help me :)

TL;DR What is Renal Coloboma and is there anyone with this condition?