Alport Sydrome

[itzmich]

Does anyone have this type of ckd. They are testing me for it.

[Alport67]

Did you ever get your results for the test for Alport Syndrome?

[itzmich in reply to Alport67]

They decided not to test me, not sure why....

[Alport67 in reply to itzmich]

I was probably because of your symptoms. How is your hearing? Do you have hearing loss? Typically hearing loss is associated with Alport Syndrome.

[itzmich in reply to Alport67]

Yes hearing loss.

[Alport67 in reply to itzmich]

I would find out why they are not testing you for Alport Syndrome. You have a reduction in kidney functions and a hearing loss. Those are two key indicators. If your current doctor does not want to test you, I would find one that will. You can learn more about Alport Syndrome by visiting the Alport Syndrome Foundation web page alportsyndrome.org/

I was formally diagnosed with AS 15 years ago. I've had blood and protein in my urine since I was a child, and noticed a significant loss in hearing in my early twenties. When I was in my late thirties I moved and had to switch doctors. After reviewing my medical history, the new doctor asked if I had ever heard of Alport Syndrome. I had not. He referred me to a Nephrologist who sent me to get the test. It's a simple test that involved taking a skin plug from my shoulder along with blood work. Those tests confirmed that I had X-linked Alport Syndrome.

My kidney functions, although they were low (GFR 30 and Creatine around 3) were stable until the last year. My GFR is now 11 and Creatine is 6. I'm finally on the transplant list and am fortunate enough to have three siblings who are all getting tested to see if they are a match.

There is no cure for Alport Syndrome, however it was nice to finally have an explanation for my loss of hearing and reduced kidney functions.

Good luck. I hope you find out what is causing your symptoms.

[itzmich in reply to Alport67]

Thank you I go to the nephrologist next week.

[Alport67 in reply to itzmich]

Good luck