The way I understand it is that IF your sister is confirmed to not have PKD, she hasn't inherited the gene, and cannot pass it on to her children.

the way I believe is is one parent has PKD there is a 50% chance that each child will get it. that is each child has 50% chance, not that half the children will get it.
PKD does not skip a generation. if you don't get it your kids won't either.

If neither parent has the disease, the children cannot inherit the disease and their chidren cannot inherit the disease. With ADPKD (the dominant form we generally talk about here), you either have it or you don't. There are no "carriers", there are only people with the disease. PKD doesn't skip generations; it has a 100% penetrance (meaning everyone who inherits the gene develops the disease to some extent, at least forming some cysts IN their kidneys; not all will become ill). So if your sister doesn't have PKD and that's been confirmed by testing (ultrasound or CT) after the age of 30 (generally considered the "safe" cutoff age when most PKD patients have developed some renal cysts if they have the gene), chances are excellent that she does not have PKD and thus her children do not have PKD.

In addition, PKD is not communicable; you can't give it to your niece or nephew. They can't get it via a blood transfusion, even if they get that blood from you directly. Even if you donated a kidney to them (I know that wouldn't happen, but play along for a minute) the only thing they would have is a cystic kidney; they still wouldn't have PKD because they didn't inherit the PKD gene and the rest of their body wouldn't be affected by your PKD gene because it's not part of their genetic makeup.

I hope this explanation helps....and keep your kidneys to yourself (unless you're facing a nephrectomy, in which case please donate your kidney(s) to research to help find a cure for PKD....you can do so through the PKD Foundation Scientific Coordinator at 1-800-PKD-CURE (no cost to you).

PKD is a genetic disease. If one or both of the parents have it, there is a very good chance the children will get it. I believe is a 50/50 chance. Keep in mind no one, I mean not ONE person in my family has it, but I do. It can be mutated as well. It wouldn't hurt to have them get yearly or every other year Renal ultrasounds just in case and for peace of mind.

Just my opinion though.

Jenn

Please do NOT have the children checked for PKD. Once that goes on their medical records, getting insured becomes a problem. You are put in a higher bracket which means higher rates and you can be denied coverage for a preexisting condition.

TGM,

I understand your reluctance to have young children checked for PKD, but I think every child of a parent with PKD should be very carefully monitored for changes in blood pressure. In the absence of any symptoms, perhaps the ultrasound can be skipped. But insurance considerations shouldn't stop us from taking at least the basic steps to keep us as healthy as possible.

I never said not to keep up regular checkups! I said that getting specifically scanned for this disease can lead to a host of issues that will affect you for the rest of your life. By all means, a parent should always take their children in for regular checkups and adults should do this also. We all should be eating healthy and exercising regularly! But we also need to safeguard our children from the discrimination in the insurance industry. If at any time you tell a doctor that your child might get PKD because you have it, that goes right in the chart and is flagged by the insurance. Never even mention it is a possibility!

There is a law, called HIPAA that makes it illegal to discriminate against patients for having a pre-existing condition, especially if they have had continuous insurance coverage prior to being diagnosed. Since the government says that only 50 million people in this country do not have insurance, that means that the other 250 million people do. In that case, HIPAA protects them from this type of discrimination. We have to stop dissimentating inaccurate information to people in regards to diagnosis of PKD! Here is the link that explains exactly how the law works: http://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Act
Please read through the site, especially in regards to pre-existing conditions and then anytime this subject comes up, educate people.
There is one caveat to this statement, while it is illegal for an insurance company to discriminate against us for our PKD, if you have private insurance, not paid for or supplemented by your employer, you may pay higher premiums. However, having a first degree relative with PKD is often enough to cause you to have higher premiums because of it's inheritability.
I am a firm believer in getting your kids tested if a: your family has a very aggressive progression of PKD, b: your family has a history of aneurysms related to PKD and c: if your child is old enough to understand what the disease is and wishes to be tested.
There is a study being conducted right now, called the Tolvaptan study, that has been fast tracked by the FDA because it shows very good progress in the slowing of cyst deveolpment. It is my opinion that if your child is diagnosed in their late teens or early twenties, and have normal kidney function, then they will benefit greatly from this medication. If you or they don't know if they have PKD, then it will be hard to start the medication and you definately cannot get involved in the study without having PKD.
I had my oldest screened for the first time at age 14 and then she requested to be screened again at 21. Thankfully both of her ultrasounds were normal. She will not be guranteed to not have PKD until she has a negative ultrasound after the age of 30 or genetic testing prior to 30, but it's given her peace of mind right now. My youngest will be 15 in a couple of months, she hasn't asked to be tested yet, but rest assured that when she does, I will get her tested. It's her body and she has a right to know what's going on with it.
Since the majority of people in this country have employee sponsered health insurance we have got to take responsibility for not telling people inaccurate information in regards to pre-existing conditions. If people still don't believe us or understand, direct them to a HIPAA web page that explains it to them.
Tami

Hi, Polykid!

The info that the other posted is correct. Just keep in mind that mutations occur.

Peace and Blessings!
CoachRichie

I did not have insurance when I was diagnosed because I had been fired from my job 1 month prior due to being ill and calling in sick too often. That being said, yes, I did have trouble getting health insurance due to pre-existing condition and my employer does not offer health insurance. Now, I found an insurance company that is covering me regardless of my pre-existing condition. Getting these tests is a benefit and good for peace of mind. Plus, we have to be proactive when it comes to our bodies. When and if they are ready, please have them get the renal ultrasounds. They will be able to get insurance down the line.

Jenn

To each their own. I will still warn people not to have PKD tests for their children. You do get discriminated against whether there is a law or not. They have ways of doing it and the burden of proof is on you to prove that they are doing it. It's like a pregnant woman going in for a job interview and being told that she won't get the job because she's pregnant. There are laws against that too but she has to prove that the interviewer told her that. If he denies it, then what is she to do? They can just say that another person was more qualified or something else. I wish it weren't the truth but it is.