Alport's syndrome

[Sam.maidment2012]

Any of you lovely formers have this genetic disease as i have. would be great to chat about with you and some of your experiences

Sam

[Mr Pink]

I have it. I was diagnosed in my early teens, but lived a pretty normal life up until a year ago, aged on the wrong side of 40. I can tell you that it is genetic, it's x-linked, and it's pretty rare. It was discovered by a British physician in the early 20th century, and in most cases, will ultimately lead to kidney failure. In some cases, deafness can occur, although I don't have that... yet. It can also affect the sight, but I don't have that either.

[WishIKnew]

My brother and I both have Alports.  Well, let me be specific.  We both had kidney failure, both have severe  and worsening hearing loss, both did dialysis for over 4 years, and both got a transplant on 2012.  We are both in our late forties.  Neither of us have the possible macular degeneration (yet). We both see our eye doctors regularly and there are specific tests they run for us.  Be sure your eye doctor knows you have Alports so they can run the appropriate tests. All attending nephrologists believe we have Alports but we've never done the genetic testing because we've been told repeatedly that our children may have health insurance issues if we confirm a genetic disease.  There is no history of Alports, or any kidney disease, in our family.  None of our children (his daughter age 28, his son age 24 or my son age 15) show any symptoms.  I may be able to answer questions and would be happy to share experiences.  What would you like to know?

I do understand that Alports is quite rare, and even more rare is my case as it is much more common in men.  Lucky me!

The Alports Group - one club we never planned to join, right?

[Sam.maidment2012]

Yeah I was finally diagnosed with alport's 2 years on 28th feb, i had always had hearing problem, and presented haematura when i was a baby, but they never put the two together, my mum had known kidney problems, her had gone down slowly for years, but when i was suddenly taken ill and sent to hospital thats when they found the alport's looking through my notes.

Reading through the different types of aloprt's mine were identical to those i had read up, so this changed my mum's diagnosis from FSGS to aloports, me and my mum are the only ones in the family with renal failure. It's like its come out of no where....as far as im aware theres on.y four people in the county i live in with alport's. I am 23 and would like to know possiblilities of me having my own children as we have tried to be referred for ferttility treat but don't meet criteria!!!! I don't want to wait til after transplant for this cos it could be years away!!! feel like im at a deadend!!

[lola]

My honey and his 3 older brothers all have Alports, all had there 1st transplant's by the time they hit 21. Our youngest daughter(10) also has "active" Alport's and we have kept it stable for 6 years now ask away on what ya want to know........Lola  (amy)