Living with IgA Nephropathy: The Personal Stories of Four Rare Kidney Disease Patients
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- เผยแพร่เมื่อ 20 ต.ค. 2024
- IgA Nephropathy (IgAN) is a rare kidney disease that causes inflammation in the kidney's filtering units, which can result in kidney damage and may lead to kidney failure.
For many patients, a journey with IgAN is a difficult one. Hear the stories of patients from different backgrounds and lifestyles who have dealt first-hand the challenges that come with living with a rare kidney disease.
To learn more about IgAN and see important resources that can support you or a loved one, visit nephcure.org/i....
You can also visit our website and browse more rare kidney disease-related support, programs, and events at nephcure.org!
From diagnosis to kidney failure took me 12years. Tried many options, helpless. Luckily got kidney, filling better but got another problems using anti rejection pills, at least I'm alive
Did you take Farxiga to reduce your proteinuria?
Hi! 12 years is such a long time, but we're glad to hear you had a transplant! How are you feeling still? It's been 4 months since your comment, but wanted to check in.
@@kevinwellwrought2024 no I use low protein diet
I'm sad :'( I live in 3rd world country . I hope those medicine will be available in the Philippines soon. :'( it's tough it's really tough .I hope we can live in US so we can a have a better fight with this IGan
Cut meat out of your diet. It'll help. I cut meat out of my diet and it has helped.
Just diagnose 3 months ago with IGAN
Hi there! Initial diagnosis can be incredibly difficult, how are you doing? We'd love to help provide resources if you need it, but please let us know.
Doctors want to put me on Farxiga but I am afraid of side effects.
I just got prescribed Farxiga.. all of the side effects do scare me but its supposedto help. I hope it goes well for you.
Please let us know how you're doing! Please also don't be afraid to ask your doctors questions about any medications. This is your journey, and you have a right to ask questions, express concerns, and more. If you need any resources, please let us know.
@@NephCure The current side effect bothering me is high ketones causing belly cramps and nausea and an enlargement of the liver
@@kevinwellwrought2024 Hi there Kevin! Thanks for responding, that's completely understandable, and I can only imagine how bothersome that is. Have you expressed your concerns with your doctor about the side effects that bother you the most? How has Farxiga been regardless of those side effects?
@@NephCure I have informed my doctor about my abdominal cramps and liver enlargement and I must now undergo endoscopy. Farxiga has not reduced my proteinuria after three months.
😢🥰