Is there a difference between Collapsing Glomerulopathy and C3?

[Shieldmaiden]

My son, 17, was just diagnosed with collapsing Glomerulopathy after having had a kidney transplant in June of 2020. My doctor told me there is no known cases of it happening in pediatric patients and my son is the youngest she knows of to ever have it. She explained to me that it usually happens either from exposure to certain viruses or has been known to be triggered by transplant itself. My son has been tested for all the viruses and he’s clear there. The doctor said it shouldn’t be happening due to transplant this far out from it either though. She did explain what’s happening basically. That the capillaries in his transplanted kidney are basically atrophying away gradually. My son has had 4 biopsies since his transplant and is scheduled for another one in a few weeks. I’ve tried looking up information and it’s all complicated doctors language. Can someone please help me understand more about it? Like what kind of time lone we might be looking at, how it affects potential for future transplant, etc?

[DavidF_NKF Partner]

Dear Shieldmaiden,

Thank you for your post . Unfortunately, my initial response did not go through, so I am very sorry for the delay.

This site is dedicated to C3G, a very rare glomerular disease, which your son evidently does not have. Nevertheless, our Expert Panel offers the following comment:

We are sorry for the challenges you are facing. Unfortunately, glomerular diseases, as a group, are incredibly challenging and confusing for patients, for families, and also, for physicians. These diseases often affect young people who were previously healthy, our understanding of the different types of glomerular disease is incomplete, and for many, there are no effective treatments. Your efforts to understand your son’s disease are incredibly important.

For additional support during this time, have you contacted patient organizations like the National Kidney Foundation (kidney.org) which may help you understand this disease? Is it also possible to consult with a psychologist or social worker at the transplant center to help your son manage? We find this time of help to be very important.

We encourage you to visit kidney.org. and paste the following links into your browser:

Talk live with NKF about your son’s condition: kidney.org/nkfcares

Living with a Transplant: kidney.org/atoz/content/kee...

FSGS & collapsing glomerulopathy: kidney.org/search-results?s... ; kidney.org/atoz/content/focal

We wish you and your son the best of luck.

[Shieldmaiden in reply to DavidF_NKF]

Thank you for the links. I did follow a link from kidney.org to get here initially. I will check out the other information you supplied as well. It’s difficult making sense of all of this. My son’s doctor told me there are nearly no papers on collapsing Glomerulopathy in pediatric patients so she even didn’t know where to tell me to look.