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Real members of MyKidneyDiseaseTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyKidneyDiseaseTeam Member asked a question 💭
East Stroudsburg, PA
June 4, 2025
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A MyKidneyDiseaseTeam Member

I wasn't given a specific diagnosis other than I had kidney disease

June 4, 2025
A MyKidneyDiseaseTeam Member

I have Tubular Interstitial Nephritis Uveitis TINU. It is a rare autoimmune condition that causes kidney disease. I also have Epstein-Barr.

January 11
A MyKidneyDiseaseTeam Member

Thank You!😊

September 23, 2025
A MyKidneyDiseaseTeam Member

That was initially my diagnosis was just kidney disease. Then my doctor suggested a genetic test, which showed me that I have Alport syndrome. Ask your nephrologist if a genetic test would be a good idea to find out what type of kidney disease you have the other way of finding out is to do a tissue biopsy of your kidney, which I do not recommend Unless it becomes absolutely necessary

September 22, 2025
MyKidneyDiseaseTeam

In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are approximately 150 different types and subtypes of rare kidney diseases, which can make them challenging to diagnose.

While 37 million Americans have some form of kidney disease, rare kidney diseases make up only a Show Full Answer

In the United States, a kidney disease is considered rare if it affects fewer than 200,000 people. There are approximately 150 different types and subtypes of rare kidney diseases, which can make them challenging to diagnose.

While 37 million Americans have some form of kidney disease, rare kidney diseases make up only a small portion of these cases. Some examples of rare kidney diseases include:

- Complement 3 glomerulopathy (C3G)
- Immune complex membranoproliferative glomerulonephritis (IC-MPGN)
- Immunoglobulin A nephropathy (IgAN)
- Polycystic kidney disease (PKD)
- Alport syndrome
- Fabry disease
- Atypical hemolytic uremic syndrome (aHUS)

Unlike common kidney disease that typically develops from diabetes or high blood pressure, rare kidney diseases usually stem from genetic factors or autoimmune conditions.

June 4, 2025

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White Oak, TX