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@gingerw

@faithwalker007 Renee I have an ultra rare kidney disease, called Type III Collagenofibrotic Glomerulopathy. This is a disease of the kidneys, where a type of collagen is building up on the filtering components of my kidneys. There is no school of thought where it comes from; there have been less than 50 ever diagnosed worldwide, and there is no cure. Eventually the progression is to end-stage renal disease, resulting in dialysis and transplant. I was diagnosed in early 2015 with it by Keck USC hospital, with second opinion by Cedars Sinai Hospital. Repeated kidney biopsy in late 2019 re-confirmed it. Right now I am Stage 4 kidney function.

I have no overt pain related to it, thankfully. There is nothing to be done, no cure. Because of the low number of confirmed cases, there is no research being done, as there is no money to be made there. Sad, but true.
Ginger

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Replies to "@faithwalker007 Renee I have an ultra rare kidney disease, called Type III Collagenofibrotic Glomerulopathy. This is..."

I am so sorry @gingerw

@gingerw
Ginger, this is very sad to hear about, I am so sorry! You say it can be remedied by transplant? Do they know if that would cure the problem, i.e. the new kidney would not develop a similar condition? Just wondering. My heart goes out to you, what awful luck to be the one to get this! My best to you, Hank

@gingerw I didn't realize how bad your ckd was I'm so sorry

Hello
I just got diagnosed with this today. Please reach out to me
I’m so scared because they told me there was no cure either

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