Help us fight for a cure

I’ll post a recap of my exciting weekend tomorrow — complete with pictures. But today, I have something more important that I need to talk about. I don’t know if I’ve ever blogged about it before, so I’m not sure how to start this post. Just bear with me if I repeat myself.

Polycystic Kidney Disease (PKD) is a life-threatening genetic disease that’s prevalent in my family. My granddad, dad, aunt and cousin all inherited it, and although we’ve not been tested, there is a 50 percent chance that my brother and I have it, too. (Symptoms usually don’t occur until your mid-30s, and tests done prior to that may produce false negatives.)

PKD is one of the most common life-threatening genetic diseases, affecting more people that Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia — combined. There are about 600,000 people in the U.S. with PKD, and an estimated 12.5 million people worldwide. Currently, there is no treatment and no cure.

The disease causes multiple cysts to grow on both kidneys and it progresses with age, often leading to end-stage renal disease. In ESRD, patients must do one of two things: undergo dialysis or have a kidney transplant. As cysts grow, they cause structural damage and massive enlargement of the kidneys — Daddy’s are currently the size of footballs and weigh approximately 20 pounds a piece. (Healthy kidneys are roughly the size of your fist.) The disease can also damage the liver, pancreas, heart and brain.

According to reports, research is promising — but severely underfunded. That’s why my family and I have decided to participate in the Walk for PKD that’s taking place in Atlanta in November. As a team, we hope to help the PKD Foundation raise money for research and patient education.

Check out our team page (http://www.pkdcure.org/crimsoncrusaders) and my personal page (http://www.pkdcure.org/heatheroquin) for more information. And spread the word – we need your help to meet our fundraising goal. There’s no such thing as a small donation – every dollar counts.

P.S. Part of me really wanted to post a picture of what a PKD kidney looks like, but I thought some of you might be squeamish. If you’re interested, click HERE.

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Comments
3 Responses to “Help us fight for a cure”
  1. Paula says:

    I’d never even heard of this disease before. I’m sorry to hear so many in your family suffer from it; I hope you and your brother will beat the odds and not have it too. I’ve sponsored you, although I can’t spare much I’m afraid. Hope it helps though. xx

  2. Jenners says:

    It must be a bit scary waiting to find out if you have this or not. I think it is great that you are doing something proactive to help out.

    And I don’t think I want to see a diseased kidney. Sorry!

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