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C3GN Does anyone else have this disease and what is your journey?

Posted by madflipper99 @madflipper99, 20 hours ago

Hi, I am 26 Female and was recently diagnosed with C3GN. It Showed it self in Sept 2025 and really kicked off in Dec 2025 where it is continuing to get worse. I was wondering if anyone else has had this disease and had it ramp up so quickly. I have lots of questions about this disease and my big question is for anyone who has this disease where you able to go back to regular life before being diagnosed or life without significant changes in your daily activities? I felt totally fine before december and no between all the medicine they have me on and my disease progressing so rapidly I just feel so tired all the time and I am unable to do all the physical activities I used to be able to do. I have recently started the Empaveli injection so hopefully that will work but I am worried I am getting every closer to needing to go thrugh a kidney transplant. I just want to know if I will be able to have my old life back. I am currently in Veterinary school in my last year so I would really like to finish school and get to practice but I am worried this disease is going to limit my activity.

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Cheryl, Volunteer Mentor | @cehunt57 | 4 hours ago

@madflipper99 Welcome to Mayo Clinic Connect. C3GN, is this a type of glomerular nephropathy? (I’m bad with acronyms.) I have a type of Chronic Kidney Disease (CKD). There is a whole group focusing on that plus lots of discussions that you may find interesting and helpful.
Regarding your C3GN, it is good that it has been diagnosed and it sounds like some treatment is underway. I believe that if I have a condition the sooner I know about it and can start developing a treatment plan the better. That has been my experience. This usually involves establishing a new normal that requires some adjustments to your daily activities. It does not necessarily mean that you have to give up on your dreams, education, career goals …..etc. It means the path to get there may be different than what you thought it would be.
My daughter was 19 (a freshman in college) when she went through a kidney transplant experience. She was a living kidney donor for her grandpa who was in kidney failure and needed a kidney transplant. It was successful and both of them completely recovered. My daughter went on to complete a masters degree and became a biologist working at Mayo in Rochester, MN. She is 42 now.
Hopefully this gives you confidence that you can live well with your condition and can accomplish the things you aspire to do.

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madflipper99 | @madflipper99 | 4 hours ago
In reply to @cehunt57 "@madflipper99 Welcome to Mayo Clinic Connect. C3GN, is this a type of glomerular nephropathy? (I’m bad..." + (show)
Profile picture for Cheryl, Volunteer Mentor @cehunt57

@madflipper99 Welcome to Mayo Clinic Connect. C3GN, is this a type of glomerular nephropathy? (I’m bad with acronyms.) I have a type of Chronic Kidney Disease (CKD). There is a whole group focusing on that plus lots of discussions that you may find interesting and helpful.
Regarding your C3GN, it is good that it has been diagnosed and it sounds like some treatment is underway. I believe that if I have a condition the sooner I know about it and can start developing a treatment plan the better. That has been my experience. This usually involves establishing a new normal that requires some adjustments to your daily activities. It does not necessarily mean that you have to give up on your dreams, education, career goals …..etc. It means the path to get there may be different than what you thought it would be.
My daughter was 19 (a freshman in college) when she went through a kidney transplant experience. She was a living kidney donor for her grandpa who was in kidney failure and needed a kidney transplant. It was successful and both of them completely recovered. My daughter went on to complete a masters degree and became a biologist working at Mayo in Rochester, MN. She is 42 now.
Hopefully this gives you confidence that you can live well with your condition and can accomplish the things you aspire to do.

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@cehunt57 yes it’s a rare disease called crescentic glomerular nephropathy. I appreciate the feedback I’m just having lots of side effects being on the steroids currently and was wondering if I will ever get back to feeling/ looking normal. Thanks

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Ginger, Volunteer Mentor | @gingerw | 1 hour ago

@madflipper99 Let me also add my welcome to Mayo Clinic Connect! Having a rare health condition can sometimes make us feel like we are all alone, doesn't it? Do you have a support team nearby you, either family or friends, to help you on those rough days?

Ask your medical team about the steroids, the type and dosage you take. I also take steroids once a week with my chemotherapy for a blood cancer, and we were able to go down in the dosage eventually. It might be worth asking your team about that. The side effects were lessened. Perhaps there is an alternative for you?

Here is a link from Cleveland Clinic that may give you some more information about your condition: https://my.clevelandclinic.org/health/diseases/25074-c3g
Ginger

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