PKD awareness week

Wednesday, September 15, 2010

Just want to bring to light that this week is PKD awareness week, that's Polycystic Kidney Disease (PKD). For those that don't know PKD is the most common genetic disease in the USA. It affects 1 in 500 people, more than Muscular Dystrophy, Sickle Cell Anemia, Downs syndrome, hemophilia and cystic fibrosis COMBINED, and I am one of those people.


I don't talk about PKD much on my blog because it doesn't define who I am, there is no cure or treatment (yet) for PKD so why worry? I take steps to be as healthy as I can and that is all that I can do. My grandfather had PKD ( he died of complications from PKD), my Mother has PKD (and currently near kidney failure), one aunt and one uncle have PKD as well as two of my cousins. PKD has affected our family in a BIG way!

When a person has PKD their Kidneys have cysts on/in them that fill with  fluid and enlarge the kidney. The difference can be quite significant as shown on the picture below, normal kidney on the right, PKD kidney on the left!



Take 5 minutes out of your day this week to learn about this incredibly overlooked disease, and possibly make a donation to find a cure for the disease or help improve treatments.

Personally I have decided that when I run a marathon (and I will someday) I will sign up with PKD and run for charity. Kinda too late for the 1/2 marathon I'll be running in 2 weeks but the next distance race, I'll be signing up to run for PKD. If you have a run/walk race coming up why not sign up yourself and race for a cure for PKD!

I also wanted to add that if you aren't an organ donor please consider becoming one! Like I mentioned there is NO cure for PKD, in end stage renal failure your only option is dialysis while you wait for a transplant. My mother is currently on the transplant list in England. Please please ensure your family knows your wishes regarding being an organ donor! And carry an organ donor card (UK) or check the box on your drivers license (USA).



2 comments:

Karen September 15, 2010 at 6:18 PM  

PKD has also been a part of our family ... my grandfather, my dad and my uncle. I have been tested and watched closely since I also have autoimmune disease (Lupus/Sjogren's) but so far, so good. Thank you for the reminder about a donation. What a great idea!

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