Diagnosed with Alports

newmom2007
0 Recommendations

Hi my name is Kelly and I am new here. Been kind of a lurker until I got the results of my biopsy. I was just diagnosed with X-Linked Alports Syndrome. I also have nephrotic syndrome. I was misdiagnosed at age 14 with thin basement membrane disease. I am a 32 year old female with 2 children, and this disease is very scary as there really is no treatment for it. I was hoping someone on here might know something about it. All the other support sights I find really have no been posted on in a while.
Any info would be wonderful.
Thanks
Kelly

1 reply

michaelp
  • By michaelp
  • Posted October 24, 2008 at 3:02 pm

Hi Kelly, not sure if you've gotten the answers you were lookng for but my son was recently diagnosed with AS. Unfortunately there is no cure and treatments are still being researched but blood pressure med. is usually prescribed. AS in women can sometimes be tame compared to men but no guarantees. It is a complex disease with no real patterns. For boys/men ESRD is definite, anywhere from teen yrs to 40 yrs old. There is a very good site which you may have found called AlportSyndrome.org where you can probably get more info. Best of luck.

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