I also have Alport syndrome. I discovered it in 2006, in 2010 I had a kidney transplant that lasted until 2020 (10 years) and from 2020 until now I am doing dialysis. I can't do a second transplant because the doctors say I have antibodies and I can't receive them and there is no solution to remove the antibodies to do a transplant. I saw that now in London different genetic methods are being tried to eliminate the mutant gene and replace it. I have heart problems and 60% hearing. Now I am 36 years old. If I get to 40, I'm happy. Good health!
I also have Alport syndrome. I discovered it in 2006, in 2010 I had a kidney transplant that lasted until 2020 (10 years) and from 2020 until now I am doing dialysis. I can't do a second transplant because the doctors say I have antibodies and I can't receive them and there is no solution to remove the antibodies to do a transplant. I saw that now in London different genetic methods are being tried to eliminate the mutant gene and replace it. I have heart problems and 60% hearing. Now I am 36 years old. If I get to 40, I'm happy. Good health!