| Subject: Re: Genetic Testing and PKD (Memphis, TN) |
Author:
beth
|
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Date Posted: 11:17:54 02/26/05 Sat
In reply to:
Kompressor
's message, "Genetic Testing and PKD (Memphis, TN)" on 04:59:08 02/24/05 Thu
My dad didn't have kidney disease in his family either. 10% or so of people with PKD get it through spontanious mutation of a gene.
There is also an acquired cystic kidney disease which develops in kidneys with bad scarring and long-term damage. This is often associated with dialysis and end-stage renal disease caused by conditions such as glomerulonephritis or diabetes. Since your wife still has decent function, I'd think this is a long shot. The probability is that she does have PKD.
There is genetic testing available if you still want to make sure. It's pricey though, a little under $3000 for the 1st person, then it's down into the hundreds for other family members since they know where on the gene to look for a defect.
http://www.athenadiagnostics.com/site/product_search/test_description_template.asp?id=249
If your wife does have PKD, some other helpful links are the PKD Foundation's "about PKD" page
http://www.pkdcure.org/aboutPkd1.htm
and my link for online support groups. They've been a big help for me in finding out information.
http://www.geocities.com/HotSprings/Spa/3265/onlist.html
One last thing, while PKD isn't something I'm thrilled about having, it's not the worst thing in the world. Many people don't even realize they have it until they're in end stage. The big thing is treat any kidney or cyst infection right away and to keep your blood pressure as close to normal as possible. That prevents kidney damage.
There's also a drug in clinical trials right now so there's actually hope of a treatment to stop PKD. I'm not saying PKD is nothing to worry about but right now, at least things are looking better.
>My wife just turned 40 and was recently diagnosed with
>PKD. She has bilateral cysts and they range from 1 to
>4 cm in size. Kidney function is still good...>80%
>right now.
>
>We cannot find any member in her family that has had
>PKD. Mother, father, and sister no problems.
>Grandparents and Great-Grandparents all lived very
>long lives with no kidney issues.
>
>I want to get genetic testing done to totally confirm
>that she has been diagnosed correctly.
>
>Any suggestions are greatly appreciated.
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