Alports people?

[MyssAnne]

Thanks, Matt! I was beginning to wonder since so many women were chiming in saying they had Alports too...after your description of your biopsy I am so glad I did not have it. Ugh. I AM sorry it was a waste for you. Man. The things that we go through.

[MattyBoy100]

My sister offered to be a living donor when I was first diagnosed.  We both went to see the consultant and she gave us the bad news.  She basically said that my sister was unsuitable to be considered as a donor due to the fact it was Alports and she was very likely to be a carrier and may suffer problems in later life.

She also advised my sister to get her urine checked regularly for abnormal levels of protein as a precaution as it is one of the first indicators that there may be a problem.

[kidney4traci]

Matty, I did not mean to mislead anyone, you did a good job of clearing the record.  Never heard of a skin biopsy, but we are using the protein sticks to keep an eye on our kids urine/protein levels.  Since I have been told Alports is not preventable, this will help along with annual check ups.  I know there are other women in my history we beleive had alports due to the age they died.  Women tend to have signs of this in the 30's, or 40's.  Back then, they just were not treated/diagnosed. 

Sorry to hear your biopsy was difficult and unproductive.  I have bad memories of mine, and that was almost 35 years ago!

[fluffy]

for all the alports ppl here. Do any of you suffer from tinnitus (persistant ringing in the ears) cause i got that pretty bad about a year ago and it hasnt stopped since

[MattyBoy100]

No, but I do use hearing aids and before I was diagnosed I used to get a rushing sound in my ears when I was in bed at night.  Now I am being treated i don't get that anymore.  It may be an idea to get an appointment with an audiologist.

KIDNEY4TRACI - I wasn't implying you had got it wrong.  A lot of ppl do not know that Alports can affect females.  The information is out there but not easy to find as Alports is still relatively rare in the medical world and not that much research has been done on the condition.

[lola]

We just had Dani's appt and her Neph is one of leading Alport researchers and he was telling me they are working with mice learning how to turn Off the Alpots X gene, he said it won't help Dani but hopefully others in the future

[kidney4traci]

That's strange - how do you just turn it off?? 

[fluffy]

i wish somone would turn mine off, i hate living like this.