Should I tell the Kids

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
Forum rules
Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.

Content in the discussion forums is searchable (example: Google, Bing, Yahoo, etc.). You can post anonymously or through a username you create, so your name will not be used unless you choose to do so. We understand that some topics are very sensitive and private in nature. If you prefer to have a private and secure conversation, please request to join the PKD in Children (PKD Foundation) Facebook group:
Posts: 1
Joined: Sun Aug 30, 2015 2:32 am

Should I tell the Kids

Postby Forest » Sun Aug 30, 2015 2:47 am

I can't decide whether to tell my children they are at risk from PKD. I'm a 53 year old male and I was diagnosed 4 years ago (no family history). I seem to have a mild form of the diseases (the consultant says probably type 2) and the genetic analysis did not find a match - though the consultant is very experienced and is in no doubt that it's PKD - I have many cysts on each kidney.

I have told my eldest daughter (24) that I have a 'kidney condition' (I have not used the word 'PKD') but I've not said more. My view is that, given that I seem to have the milder PKD2 type, I don't want to tell her at this stage - I don't think I would have wanted to know at 24. I'm worried it will impact on her well-being (I worry about my PKD) and I'm concerned that her long-term boyfriend might be scared off. Then there are all the problems with insurance, mortgages, etc.

She does complain that she has 'irritable bowel syndrome' occasionally but her blood pressure and health seem OK otherwise. Should I say more or am I right to want to wait until she's older or develops obvious symptoms?

Posts: 3
Joined: Mon Feb 15, 2016 2:07 am

Re: Should I tell the Kids

Postby M37ny » Tue Feb 16, 2016 7:19 am

In my opinion you should definitely say it, the chances they have PKD are 50% the erlier they find out the better. With PKD there is a big risk of brain aneurisms, I am 37 years old, first cysts were found on my kidneys when I was 15/16 I had many MRI's of my brain since then and last year they found a brain aneurysm, it was treated and I am fine but if I didn't know about it could potentially be deadly for me. When a woman has PKD and she gets pregnant she should be going to high risk clinic because there is a lot of bad things that can happen during pregnancy if a woman has PKD.
Another thing they should know about is risk of high blood pressure and vascular problems.
I believe your children should know and should be tested for PKD.


Re: Should I tell the Kids

Postby Guest » Thu Aug 03, 2017 8:16 pm

I think talking to your kids about PKD is a very personal decision. I was diagnosed with PKD when I was 30 years old. I had two young children at the time and it was hard to bring myself to tell them anything about PKD. We decided to tell them when they were older. I don't know if we made the right decision or not but it was the way we were comfortable handling it at the time.


Re: Should I tell the Kids

Postby mark » Sun Aug 13, 2017 1:30 pm

When you say the genetic analysis did not find a match, what do you mean exactly? PKD is supposed to be caused by a mutation on one of two genes. If those genes are ok (which I dont know if they could be), then perhaps you wouldn't pass this on to your children? if on the other hand you're referring to having a de novo mutation (which is what it seems I have) then I think there is the usual 50% chance that you could pass the gene on.

Return to PKD Parents

These discussion forums are owned and maintained by the PKD Foundation. To learn more visit