I am 28 and I have been living with Alports since I was 3. I never thought in a million years this would happen to me. The Doctors always told me I would probably live a normal life. I went on
Dialysis for 9 Months and I recently had a
Kidney Transplant in March 2009 that my father donated. I am doing great! But I took my 9 year old son to the doctors last week and they found blood and protein in his urine. They are calling it Chronic Nephritis until we have the genetic testing done to be positive that I have passed the gene onto him. Do any other moms out there have any advice on how to explain to my son that he is going to be OK after he has watched me go through so much in the past year. He was so angry at me after leaving the doctors office. He said some pretty hurtful things. I know he is scared but he saw me go through so much.
Posted on 10/22/09, 02:10 am
My son was diagnosed at age 14 and he is doing fine now, 6-1/2 years later. He is controlled with Cozaar. No dialysis or kidney failure. I'm told that since his is x-linked, his sons won't have it but his daughters will be carriers. His two siblings show signs of Alports but they just have occasional blood in their urine. 
