Feminist, Fictionista, Foodie, Francophile

Thursday, February 14, 2013

Polycystic Kidney Disease--time for a cure

As medical conditions go, PKD is not one of the sexy ones. It doesn't have celebrity spokespeople. It doesn't have a high profile on the charity circuit. The condition is genetic. The condition is incurable, although it often can progress slowly and can be somewhat slowed by low-salt diets, a regimen of diuretics and other treatments, it doe not have a cure. Kidney transplants may not even work because the donor kidney can sometimes become cystic. A cystic kidney is an enlarged kidney and bigger is not better in this case. I'd never heard of PKD until 25 years ago when I met the woman who has become my sister-friend. Her father had just died of it and she and her two older brothers were living in the shadow of the disease. Her oldest brother's health began to fail when he was in his 40s. He was a college professor, a brilliant geneticist, a champion darts player. There were long hospitalizations and stretches of dialysis. He had to resign his job.
A few months ago, he had a massive heart attack and barely survived. Only a few weeks ago one of his feet and part of his calf were amputated. Tonight he's back in the hospital after a surgery meant to save his other foot.
So far so good, but no one knows what will happen next. Or who it will happen to. Because as it happens, David is not the only one I know who has PKD. Chances are someone in your circle of friends and family has it too because PKD affects 1 in 1000 Americans. To give you some perspective, roughly 2-4 people in 1000 have some degree of hearing loss, up to and including profound deafness.
PKD doesn't have a cure but they do have a foundation. If you'd like to learn more, check it out here.

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