alport syndrome

[kaffirb]

hi dear friends Im suffering Alport syndrome from childhood may you share your idea concerning my disease

[Hidden]

Hi! My husband has alport syndrome. He's 32 years old and his GFR just took a nose dive to 23. Alport syndrome is tough. How has your hearing and sight been?

[Cap_dragon]

Hi, I was diagnosed in 2013 with alports, even though NO ONE in my family has a history of it. I was at stage 3 for a while and then went through a lot of stress from graduate school over the summer which put me at 32GFR and now at 19 GFR. Seeing a nephrologist regularly and making plans to get myself ready to get on a list. That alone comes with a whole host of difficult thoughts and decisions. I am only 30 and feel that I am too young to be dealing with this but unfortunately this is the reality. My advice is to change your diet to prolong kidney function as soon as you can. That means no alcohol, no caffeine, and limited salt intake and find a nephrologist you like and can go to consistently.

[kc4t]

Hello, I'm due to be tested for alport syndrome. I think my hearing and sight are ok - but I have CKD and my new nephrologist would like me tested. Are there any good online resources? I'm struggling to find much about it