What causes Focal segmental glomerulosclerosis (FSGS)?

Posted by maryj2023 @maryj2023, Apr 27, 2023

What causes it

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Hi @maryj2023,
According to Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693
"Focal segmental glomerulosclerosis can be caused by a variety of conditions, such as diabetes, sickle cell disease, other kidney diseases and obesity. It can also be caused by an infection and drug toxicity. A rare form of FSGS is caused by inherited abnormal genes. Sometimes there's no identifiable cause."

Have you or a family member been diagnosed with focal segmental glomerulosclerosis (FSGS)?

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FSGS
got a family member with that. and, no one can say how he got it. not the nephrologists, not the competition. my suspicion is that the heavy and diverse bunch of meds he takes was just too much for the kidney. i've never had a medical professional take the bait on that. one thing is clear - it is not going to go away. permanent. on dialysis for 17 years, so far.

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@longtermcaregiver

FSGS
got a family member with that. and, no one can say how he got it. not the nephrologists, not the competition. my suspicion is that the heavy and diverse bunch of meds he takes was just too much for the kidney. i've never had a medical professional take the bait on that. one thing is clear - it is not going to go away. permanent. on dialysis for 17 years, so far.

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I was not given the reason of the cause of FSGS. I read online that few people got it from Covid vaccine. What do you think? My son was not on any meds prior to this.
I wish I knew what caused it. He is on RITUXIMAB right now. Just waiting to see if there’s any slight improvement. He was never sick with anything. I still want answers. He sees two nephrologists.

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Mary
there are medical professionals. i'm a medical amateur. been managing my son's medical situation, very complicated, for almost 40 years. me, 11 years as his dialysis tech, here at home.
as for covid vaccine related to FSGS, i'm skeptical. with the billion + covid vaccines having been given, a relationship to FSGS would show up. i haven't heard that case presented. from what i understand, FSGS is not well understood. the causes are often, even usually, not known.

wishing you well, and my your son safely navigate away from needing dialysis.

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