Fibrillary glomerulonephritis

Hi Jennifer.
Just curious about the cookbook you ordered. I have been experimenting with various recipes...there is a recipe out there for "nomato" sauce which is a decent alternative for tomatoes. Have you discovered any great recipes that are kidney healthy?
Hope you are doing well!

Sorry haven't been on here for a while. But since I can't fly right now they expedited my medicine here to Idaho. I started my injections last Monday. I do them twice a week Monday and Thursday. Today was my third injection. I also take a pill in the morning and one in the evening every day. I will keep you guys posted

my sister in law was just diagnosed with this. Can you share name of Dr or hospital that has the clinical trials helping you? I appreciate any information you can share on a dr she can turn to

Hello @va63 and welcome to Mayo Clinic Connect. I understand you are reaching out to provide some support to your sister-in-law with her diagnosis. Perhaps members like @jennifer208 and @vhussey29 would have some additional information they could share to aid in your search for where to start.

Is your SIL happy with her care following diagnosis or is she looking for other options?

she isn't happy with lack of MD support and is looking for options. I shared this link with her and her daughter yesterday. They apparently heard of the trial and looking into it

@va63 , that is a great start. Keep us posted!

Hello @jennifer208,

I was noticing that it has been a while since you last posted. How are you doing with the med that was expedited to you? When you last posted you had your third injection.

I would enjoy hearing from you. Could you post an update at your convenience?

Has anyone that has been diagnosed with fibrillary glumerolunephritis also been diagnosed with a lung disease at the same time?

Can you explain how this can have something to do with this disease? I know already I am Iga deficient from my GI dr. Does any of that mean anything?

Type III Collagen Glomerulopathy (Collagenofibrotic Glomerulopathy

I just got diagnosed with it today. I am very scared and I don’t know what the outcome is. Especially when they say there’s no cure or no treatment. I have an extreme amount of protein in my urine and I know there’s only a very few cases in the entire world with us. Does anybody know anybody who survived this?