Alport syndrome

Hi , welcome to the community! I hope others with Alport syndrome may be able to chime in and share their experiences with you. In the meantime, we do have some articles about living with stage 5 CKD. I'm passing these along in case you might be interested: https://chronic-kidney-disease.net/late-stage, https://chronic-kidney-disease.net/living/manage-mental-health, & https://chronic-kidney-disease.net/end-stage. If you're looking for anything more specific, please let us know! Hope this may help, Minel (Team Member)

Hello Scottie.
I just had my genetic testing done last week and I’m COL4A4 Alport Syndrome both recessive and dominant. I’m 70 years old so I didn’t know I had ckd until I was in my 50’s and I’m stage 3 right now. I go see my doc tomorrow and hope she can explain more to me about AS. I also have free genetic counseling I’m going to take advantage of. I don’t have vision or hearing loss to date. I did have cataract surgery done end of last year but again I’m a senior adult so nothing unusual.
How long have you known about your AS? Is there anything your doctor has told you to do differently because of the AS? Are you on dialysis? I eat a plant focused diet and try to drink 64 oz of water a day. The only thing I’m bad at is exercise. I am such a sloth. 🦥 I need to get motivated and maybe I will once it warms up a bit. It’s been so cold to go outside. Reach out when you want. ☺️