Experiences With a Rare Type of Kidney Disease
While kidney disease itself is not rare, there are over 150 types of rare kidney diseases. Does anyone here live with or know someone who lives with a rare type of kidney disease? How has living with a rare kidney disease impacted your diagnosis, care, and/or treatment plan? Please share your experiences with us 🦓💚
My twin sister and I have a very rare disease, which they say is a genetic mutation. We only discovered from a biopsy of our transplant kidneys that both failed due to the disease attacking our transplant kidney, which was ten years later than when we were first diagnosed. My current treatment plan is to control my blood pressure and unfortunately, as it's rare, they can only treat the CKD and my kidney transplant.
Lupus 7 CKD
Hi
, thanks for sharing your experiences with us. There are a few people in this community, including some of our health leaders who have lupus and CKD. Were you diagnosed with lupus first or CKD? Also, not sure you're aware, but we have a sister community for people living with lupus (Lupus.net) if you are interested. Warmly, Minel (Team member)
Systic kidney
Hi
, thank you for sharing with us. How did you get diagnosed with cystic kidney and how old were you? Warmly, Minel (Team member)
Polycystic Kidney Disease
how have you been feeling lately? How has your treatments been? Jill (Team Member)
