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← Return to Fibrillary glomerulonephritis
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Kidney & Bladder | Last Active: Aug 21, 2023 | Replies (76)
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@jennifer208 Is your appointment today? I hope you can gather some insightful information!
I have an ultra-rare kidney disease also, diagnosed in 2015, called Type III Collagenofibrotic Glomerulopathy. There have been less than 50 patients in the world. There are collagen fibers depositing on the filtering components of my kidneys. Right now I am Stage 3b, and trying to hold my function as well as I can by diet and lifestyle.
We will be looking forward to hearing from you.
Ginger
Replies to "@jennifer208 Is your appointment today? I hope you can gather some insightful information! I have an..."
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So I go Feb 14 to my nephrologist here in Idaho the 14 of February. I don't know what she's going to do. But when she told me she said as of now there's no treatment available. The Mayo clinic told me to get a bone marrow biopsy. Can't do that til the appointment with my doctor. So I'm searching to see if there are any clinical trials research out there for my disease. I also was told it's very rare