Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
On "House" tonight, Chase mentioned the possibility of PKD again, at 45 minutest into the show, in trying to diagnose a teenager.
I think it would be a great idea. It could do some good, as it might bring at least a little awareness about the disease.
As I sometimes sit back and think, I question most PKD statistics. I understand what it has been said many times before, regarding so many people having PKD and not knowing about it, and how PKD in many instances is not noticeable. But I have still not known anybody outside the medical community that has even heard about PKD.
PKD Foundation may be doing an effort, especially with the PKD Walks which I believe must require huge efforts and lots of helping and caring people, but still, this somewhat common disease is basically unknown to most people.
does anyone know how PKD affects cats? do they have similar symptoms as humans?
Alas, we're boring and not exciting, so we only get mentioned in passing. House would be bored to tears with us; we take too long to do anything!
PKDAD,
That 1 in 500 people have PKD is a made-up number (I was told that in confidence so I'll refrain from telling you who and where it came from). The incidence rate is actually around 1 in 1,000 as verified in complete genetic tests of a couple of countries, Iceland and the Seychelles (the rate in the Seychelles, an island off the coast of Mauritania, which is an island off the east coast of Africa, the prevalence is 1 in 1,000 for the predominantly European populations and 1 in 2,000 in for those of predominantly African heritage). Most other countries use 1 in 1000; only the US, via the Foundation and a few researchers and thus working it's way into NIH documentation, keeps promulgating 1 in 500 statistic, but that latter has no demographic data to back it up. And if you read the professional literature, not the foundation literature, you'll find that the researchers genearlly use 1 in 1,000 for their work.
Having been out there in the community for a number of years doing education on PKD, I was surprised that a fair number of people had heard about PKD. Other than medical professionals (very few nurses I encountered had heard about the disease unless they worked with dialysis patients or in nephrology), most doctors knew the basics, cardiologists and nephrologists obviously more, and a boatload of children were learning about it in genetics as part of their science class as an example of an autosomal dominant and autosomal recessive disease (I was truly amazed how many; there was a school with a child with ARPKD in the area but must have been part of the curriculum for the whole school district based on the number of children who came through and knew about it). I met a few patients, family members, friends and acquaitances of those who had PKD. And a few who obviously knew what it was but didn't want to stop and talk as the mention of PKD was too painful for some reason.
The PKD Foundation is NOT getting the word out. They are focusing on the already converted. And their focus is on raising money, not educating the public. They may have a brochure and a some pamphlets and some Q&A on their website (most of which is deplorablely inaccurate), but that's it. They want money for research, period. Which is fine if they would just come out and say so and not prentend that education is part of their mission. The webinars are new (and undoubtedly ludicrously expensive).
Yes the walks are incredibly time consuming, but those huge efforts are done by volunteers at the walk sites, not by the foundation at Kansas City. Just so you know, the staff of the Foudnation, from top to bottom, know little to nothing about PKD. Individuals may spew statistics, but listen carefully, those statistics will change by the minute and you can't get the same answer twice (a serious problem when you can't back up your statements with fact).
When you call the foundation and ask about PKD, they know nothing; at best they MAY send you an information package (if you get the right person on the right day). Send money and the chances of getting an information package increases, but only a little. I know, I've tried, not only for myself, but for others. Never got anything in the mail other than ending up on yet another mailing list for more solicitations. Give them your phone number, you'll get phone calls. Give them your email address, you'll get email solicitations. Tell them you have PKD, they'll still tell you about someone else with PKD who is having a problem and wont' you help.
They never seem to know who their market is despite the fact WE tell them in black and white when we sign up to be members (I am no longer a member for this and oh so many other reasons). For example, they will send me a letter telling me that your daughter has been diagnosed with PKD and faces the possibility of hypertension, dialyisis and a transplant, but there is HOPE. Send money NOW (and it's usually a pittance, less than I've donated in the past, something they also don't keep track of) and hopefully we can find a cure for HER. Yet they know I have PKD and they never say send us money and hopefully we can find a treatment and cure for YOU. Dumber than dirt and very insulting to all of us who have PKD but get stories about someone else who may well be better off than we are (sorry, just using you as an example of the lunacy of their marketing and not knowing their audience; it just turns off so many people who also have PKD).
Somehow they don't understand that if NO ONE knows what the disease is, NO ONE but those affected will donate money to find a treatment or a cure. They may not have Jerry Lewis and the advantage of what he did for Muscluar Dystrophy, but at least they could get their webiste right. But instead they rely on the patients to fund their own research; we're the proverbial self-licking ice cream cone we are constantly bombarded with requests to fund our own research. And that mailing list is sold to other organziations which is why once you join you suddenly start getting solicitations from other organizations as well, ones you never signed up with. For the PKD Foundation you must actively OPT OUT of having your personal information being sold and very few of those who ansser the phone have any idea of how to do this. And if you try to opt out of the emails via the email unsubscribe function, well good luck; the server that is supposed to enable that has been down for months and since there are multiple email lists, you never actually know which one you're opting out of.
Helen,
PKD is the most common genetic disease in cats, especially Himalyans and Persians, and due to cats not being very selective in who mom and dad actually are, it's found in basically every breed and every "mixed breed" type of cat. Again, no treatment, no cure. The cats get cystic kidneys, somewhat enlarged and generally only live to be a few months to 4-5 years old (depending on how it affects each cats). If you're flipping through Cat Fancy magazine and come across listings for breeders of Himalayans and Persians, you'll often see an annotation "guaranteed PKD free" because the cats have been genetically tested and are free of the gene. When I first started doing research online on PKD, all I could find was information on cats; the people research came on line later!
One of my cats came to me as a 12-16 week old kitten, complete with a broken leg and blood in his urine. The vet thought he had been hit by a car or tumbled in a dryer. A month later his leg had healed beautifully (it had already started to heal straight when he was found) but he still had some blood in his urine. So we talked about what the cause could be. Vet mentioned PKD. I told him only one member of the family could have PKD at a time and I already had it. He wasn't aware of PKD prevalence in humans; I didn't know about PKD cats. We both learned something new and NO, my cat doesn't have PKD, his kidney just needed a bit more time to heal. He's now nearly 13 years old, still thinks he's a kitten, weighs 16 pounds and is my sweet guardian.
PKD is also relatively common is certain breeds of dogs, beagles stand out in my mind, but there are some others as well; I just don't have ready access to the information (a friend did some research for one of our PKD walks to we could make walk signs to appeal to the animal lovers and show this is more than just a human disease).
For all,
Keep in mind too that there are so many people who have been diagnosed and never give PKD a second though because there's nothing they can do about it, so we never hear from them on a message board and they never talk about it (so many families condider PKD a family secret, the disease they don't talk about; generations grew up not sharing information and nowadays you don't want the insurance companies to know because it's a pre-exisiting condition). And no, the gentic information non-discrimination act, which has not gone into effect yet (the implementation laws have not been finalized and won't be till next year at the earliest), does NOT protect you from medical insurance rate hikes or denial of life insurance based on a known disease. It will only protect you based on the fact that you MIGHT carry a gene for a disease, but remember, if you're found to carry the PKD gene, you have the disease, so it's a moot point and all much too complex. There are also many people out there who have PKD, have symptoms but have absolutely no idea they have PKD because no one has looked for it specifically. And there are many people who have PKD but never know about it because they have no problems, ever.
Okay, I've rambled on and defintely spoken my mind, probably a bit too much. But there you go; 4 years as a chapter and walk coordinator will do that to you. It was exhausting and rewarding; I loved the people and I love getting the word out and educating the public. But if I can't count on the integrity of the information I'm presenting and the organziation I'm representing, I shall get focus my efforts elsewhere, like here and with my local transplant community where I am currently working on a donor family shawl, something that will be given to a donor family immediately upon donation, a token of appreciation and to keep them warm (hospitals are so cold and sterile). I am just fighting the yarn and color they sent me every step of the way; it's just a dreadful type of yarn (frays and shreds) and color...herb green, looks a cross between an Army blanket and the putrid green battle dress uniform; it's a very depressing and uninspiring color and the fraying and splits are frustrating the heck out of me as I'm a perfectionist and it's not cooperating! I think I may just go out and buy a different yarn and color, something better and definitely less depressing than variegated battle puke green!
Cheers,
Ruth
If you want to see more about PKD, sign up for "Google alerts"; it's heartening to see how often polycystic kidney disease is mentioned in newspapers around the world.
I've never understood why more wasn't done to educate the public and to raise money for research. But now I understand a lot more about the politics of the PKD foundation and you know, unfortunately, I'm not surprised! I made a point to educate my fellow students, while going through nursing school and I based my research paper for my statistics class on PKD. But that's not enough.
We'll never raise enough awareness about PKD until someone famous has to deal with it and I'm not sure if even that will help. All these movie stars and other famous people are always getting behind some "Cause" or another but I've never seen any of them get involved with PKD.
At any rate, thanks for the insight into the inner workings of the Foundation. I wish things were different and maybe someday they will be, until then all we can do is raise awareness in our own littel worlds and hope that someday people will understand how important researching a treatment or cure for PKD truly is.
Tami
I read your reply and was extremely moved. What can I do? I'm here, in Kansas City. Tell me what I need to do to get our disease noticed! Everyone in my family has been effected by this; my mother, brother, sister, daughter, nephew and me. What can I do? Contact the media? Everyone looks at me with "deer in the headlights" look when I mention PKD. No one knows what this is! Why?