Anyone here have Alport Syndrome along with EDS?

6 Answers

spitzerk
Answered 5 months ago    reply

I have abnormal function in kidneys but that’s it

faded_consultant
Answered 5 months ago    reply

I haven't been diagnosed with it, but it's been brought up. I got my results from Genes for Good back and it states I have a mutation in the COL4A4 gene that is probable pathogenic. I have normal kidney function tests but in my urine there is always protein and sometimes blood.

Thinking maybe I should push for a kidney biopsy to test for it.

spitzerk
Answered 5 months ago    reply

kyra I always have blood and white cells and have to get tested every 2 years for bladder cancer


specht.t
Answered 5 months ago    reply

I've ALWAYS had blood and protein, it's the norm for me

faded_consultant
Answered 5 months ago    reply

As have I, well within the last 5ish years.

specht.t
Answered 5 months ago    reply

They assume it's my organs getting inflamed and causing internal fissures


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