Chronic Kidney Disease

[Owen65]

Hi, has anyone heard of primary FSGS?

[Cap21_NKF]

Learn more about primary FSGS here: kidney.org/atoz/content/focal

[Sophiebun11]

Yes. Have you or a relative been recently diagnosed? Are you seeing a Nephrologist?

If you haven't seen a Renal Dietician it's a good step. Diet won't reverse the scarring, but it can help slow the progression.

Welcome to the forum : )

[WYOAnne NKF Ambassador]

Yes, have I ever!!! I was diagnosed with FSGS back in 1991. I had a transplant in 1999. Am doing wonderful for the last 22 years.My FSGS was initially due to a case of STREP throat at age 9. About 2-3 months later I wound up hospitalized for nephritis. About 30 years later I was at 50% kidney function (1991). They started looking at my kidneys due to high BP. That was my first symptom back in '91.

How about you? are you diagnosed with FSGS?

[JoShmo]

Hello I have primary FSGS and didn’t get the diagnosis till after a arthroscopic surgery on my hand in 12/2019. I was diagnosed in 2/25/2020 and no explanation on how I got it. I have been on dialysis for a year and got a kidney transplant July 2021. But the FSGS has been attacking the new kidney and the doctors are telling me I will probably need dialysis again. They don’t know what else to do 😢