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A MyKidneyDiseaseTeam Member asked a question 💭
Brevard, NC

I was recently diagnosed as having Alport Syndrome originally they just said CKD after having a genetic test done I now know it’s Alport

February 14
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A MyKidneyDiseaseTeam Member

I do have some hearing loss according to the hearing aid place I went to recently I need hearing aids, but I can’t afford them so I guess you’d have to. I’d have to say yes.

March 5
A MyKidneyDiseaseTeam Member

It was a company called Natura and my doctor told me about it. They sent me a kit and I sent it back easy

March 4
A MyKidneyDiseaseTeam Member

@A MyKidneyDiseaseTeam Member
Has your vision or hearing ever been affected by the Alport's?

March 5 (edited)
A MyKidneyDiseaseTeam Member

What specific test diagnosed Alport?
Is the test expensive?

March 4
MyKidneyDiseaseTeam

How are you managing your recent Alport syndrome diagnosis?

You're not alone - Alport syndrome affects about 1 in every 50,000 people. It's an inherited kidney disease caused by genetic mutations that affect how your body makes collagen, a protein that gives your kidneys, ears, and eyes strength and structure.

In Alport Show Full Answer

How are you managing your recent Alport syndrome diagnosis?

You're not alone - Alport syndrome affects about 1 in every 50,000 people. It's an inherited kidney disease caused by genetic mutations that affect how your body makes collagen, a protein that gives your kidneys, ears, and eyes strength and structure.

In Alport syndrome, abnormal collagen damages the tiny blood vessels in your kidneys, allowing blood and protein to leak into your urine. This kidney damage typically gets worse over time.

There are different types of Alport syndrome:

- X-linked Alport syndrome (most common, about two-thirds of cases) - tends to cause more severe symptoms in males
- Autosomal dominant Alport syndrome - usually milder but may still lead to kidney failure
- Autosomal recessive Alport syndrome - affects males and females equally and often progresses faster

Besides kidney problems, Alport syndrome can also cause vision and hearing issues since collagen is important for those organs too.

Treatment usually involves ongoing monitoring with your nephrologist and managing symptoms as they develop. It's good that genetic testing helped identify the specific cause of your CKD - this can help guide your care plan going forward.

February 14

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