Alports people?

[Budman]

Just wondering how many others have alports, I know it's rare but just would like to talk to someone with it, and those of you with it...how is your hearing!

[anja]

Budman, I was diagnosed at Mayo., tentatively at best, to  have Alports- evidently my father has it also, he has been on hemo. 5.5 years, I have been on PD 1.4 years.  Dad's hearing is nil in one ear and poor in the other. My sister has diminished hearing in one ear and my hearing has not been affected. 

[MattyBoy100]

Hi Budman,

I was diagnosed with Alports 3 months ago.  I am 34 and had already been using hearing aids since I was a teenager.  I now have kidney failure and am on haemo.  I wear two hearing aids and my hearing without them is like having my ears stuffed full of cotton wool!  My uncle (now deceased) also had Alports and used one hearing aid though he started dialysis at age 19.

[Epoman]

Here is NKF info on "Alport's Syndrome"

http://www.kidney.org.uk/Medical-Info/alports/index.html

Here is the WIKI on "Alport's Syndrome"

http://en.wikipedia.org/wiki/Alport's_Syndrome

Sorry I wish I be of more help.  Keep checking back on this thread others may post with more experience.

[fluffy]

I have alports too, my hearings lousy but i read lips pretty well so i usually dont need my hearing aids 

[lola]

My husband has Alport's and his hearing is awful, he really should wear hearing aids but won't. We also have a 5 yr old daughter who is stage 2 ckd.

[fluffy]

I dont blame him for not wearing them. from my experience they seem to dull what natural hearing you have left and then you get dependant on them and need to wear them more. I just find them really uncomfortable.

[rimbo74]

I have known that I have had Alport's since I was 13, I'm now 33.  I had a kidney biopsy way back when because I had blood in my urine and hearing loss.  I wear two hearing aids due to the nerve deafness.  I used to not wear them but I was missing so much without them.  My kidneys finally failed last year and started PD dialysis.  I had my kidney transplant last week and according to the doctor, the disease will not effect the kidney I received from my brother.  I'm the only one in my whole family that has been diagnosed with the disease.  Lucky me!   

[fluffy]

My story's pretty much the same as yours Rimbo. i ogt stuck with the same kind of nerve damage deafness, they caught it when i was 12 my kidney failure wasnt diagnosed til i had the biopsy at 18. i went on pd a couple years later and now pd isnt workign anymore so im on hemo.

[kidney4traci]

Rimbo - Congrats on your transplant!  How are you feeling?  ...  I too have Alports, but no hearing loss.  They tested it as part of my transplant workup.  I remember my father having it though, and he wore a hearing aid.  I am one of the (un)lucky females with Alports that has kidney failure, they told me I would just be a "carrier" so I never saw this coming. 

[rimbo74]

Im still in pain but I'm feeling great besides the pain.  I have a daughter so I'm hoping that she is just a carrier of the disease and is not actually effected by it.  Kidney4traci im sorry to hear it has caused kidney failure for you, I always thought the disease was worse for men.  I'm  the only one in my family that has the disease, we are thinking it came from my mother, not sure though.

[Sluff]

Rimbo - Congrats on your transplant! How are you feeling? ... I too have Alports, but no hearing loss. They tested it as part of my transplant workup. I remember my father having it though, and he wore a hearing aid. I am one of the (un)lucky females with Alports that has kidney failure, they told me I would just be a "carrier" so I never saw this coming.

That's the kind of surprise, you could have done without.

[fluffy]

i think the alports gene is passed down through the mother. but i was always under the impression that women never got to the kidney failure stage of alports, thats why i was hoping to have daughters. it sucks tho, alports is a shitty thing to be stuck with whether you're male or female. talk about lucking out in the genetic lottery thanks Mom!!!

[lola]

we thought girls were also carriers(very slim to suffer but in older woman) but our 5 yr old daughter is stage 2 ckd she's even young for the males who suffer

[fluffy]

  oh man, 5 is really young for that to start. how are you guys managing?

[kidney4traci]

My heart goes out to you, 5 is way too young, I am sorry to hear that.  I have two girls and a boy.  I did have their pee checked for proteins, and the girls are spilling protein but praise God my son didn't show anything.  It is hard knowing that it can get passed on.  I prayed and prayed it wouldn't.  For me, at least I am feeling well.  I am impressed at how much clearer I think now that I am on Nxstage and doing tx at home, more often.  I have energy, and can eat better too.  I am hopeful too that a transplant will get rid of the disease, for the life of the transplant. 

[lola]

Do your daughters take high blood pressure meds for the protein in there urine? Our Neph specializes in Alports and said research has shown it can lower protein levels and limit the damage being done to the kidney's. We tried it but it did not work for Dani so we just stopped this last week, but maybe it could help your daughter's. It sucks having my husband on the "list" and now we will have Dani there in a couple years. I would check into the meds with your Neph, how old are your daughters?

[MyssAnne]

Another Alport's family, my dad has it, no kidney failure, that we know of, but severe hearing loss, one brother with severe hearing loss, one sister with severe hearing loss, then me, severe hearing loss AND one kidney only, that failed last year, so I'm on CCPD. I was the lucky one. Yay.

[kidney4traci]

My daughters are 14 and 10.  We have checked their bp, and they are ok for now.  We get them adjusted regularly (their father is a chiropractor) and that is shown to keep bp in check too.  And it keeps their nervous system healthy and keeps everything communicatng the way it should.   Prayer too.  Thanks for the tip though.

[fluffy]

i had no idea so many ppl had alports. my doctors always talked about it like it was the rarest condition on earth.

[MyssAnne]

Bwahahaha!!!! Guess he never came on this site, either, eh?  My guess is there are a lot of us out there, and most likely quite a few have never been diagnosed with Alports. 

[fluffy]

most likely, cause you need a biopsy to diagnose it, and biopsies suck. im guessing theres a percentage os ppl who get diagnosed with kidney failure and they decide to skip the biopsy. cant blame em

[MyssAnne]

I can't either. My neph actually made the decision to NOT do the biopsy, since I had only one functioning kidney. He was afraid that there might be a slipup and my kidney would be nicked, poked, etc. Which is fine with me. The less surgery the better. 

[kidney4traci]

My dr based it on family history.  Actually, now that I think about it, they did do a biopsy when I was 7 years old and that is when they said I was a carrier.

[MattyBoy100]

I would like to put everyone straight about some misinformation that seems to be prevailent about Alports' Syndrome.  Generally speaking, the defective gene is carried by females and passed on to males who may then develop hearing loss or kidney failure or both.  For many years it was believed that only males would suffer from Alports'.

This is not the case.  As time has gone on and more research has been done, women may also develop Alports' Syndrome though it is not so common as in men.  So I just want to put ppl right that you shouldn't believe it only effects males.  Women need to be aware it can affect them too.

I have also heard about this skin biopsy that can be used to diagnose Alports.  This is by no means the standard for diagnosis and I think some other conditions have to be met first and in fact it is rare for a skin biopsy to be accurate with regards Alports.

As for a kidney biopsy.  I have had one on the insistence of my Doctor at the time.  I regretted it afterwards as it hurt like hell.  To make matters worse, the tissue they got from the biopsy, the nephrons were so badly deterioriated they were unable to identify my condition from the tissue alone.  My family history and medical records indicate it is Alports however.