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    PKD Charity for Autosomal Dominant PKD

    Travel insurance advice

    Hello,

    I wonder if anyone has any advice please regarding travel insurance. My son has recently been diagnosed with PKD and we already had already booked a few days holiday to Kraków planned in December. I understand this diagnosis will affect any insurance? Is this correct and if so does anyone have an insurance company which insures for this condition please?

    Apart from the shock of finding out he has this disease and the long term effect on his life (which is obviously the most important thing), there seem to be other things ie. insurance that will also have an impact.

    I'd just like to thank everyone involved in this site, I have only just joined and the help and advise you give to each other is amazing.

    Many thanks,

    Jackie

    16 Replies
    oldest • newest

    Hi

    I have ADPKD and have found travel insurance can be very high. Shopping around I find is the best way as prices vary enormously depending upon what stage you are at....

    This is good starting place......

    kidney.org.uk/help-and-info...

    I too find this healthunlocked site really useful. There is always someone who is experiencing what you are experiencing and it's good to know that help/ advice is always available....

    Good luck

    Margaret

    Reply

    Many thanks for your help Margaret, I will look on the website to start with as you suggested.

    Best wishes,

    Jackie

    Reply

    Hi Jackie

    I’m sorry your son has been diagnosed with this condition.

    I too have PKD but the only thing to declare on travel insurance is that I have high blood pressure.

    If I can be of any more help please contact me.

    Regards

    Andrea

    Reply

    Hi Andrea,

    Thanks so much for your reply. Is that because the company you use doesn't want any pre-existing conditions declared or that PKD doesn't come under that? I've heard they want to know which stage you're at but we're new to this so not sure about things really. My son is having a blood and a 24 hour urine test next week and the hospital said that will show if he has CKD. At the moment we only have the geneticists opinion it's PKD (although she seems certain it is) ..he still hasn't had the results of the genetic test. I haven't contacted any insurance companies yet as I'm not entirely sure what information to give .. I thought I'd wait for the test results. Another lady has given me a link to companies on the Kidney website but that sounds encouraging if you haven't needed to declare PKD.

    Many thanks,

    Best wishes,

    Jackie

    Reply

    Hi Jackie

    They’ll be able to check for the kidney function with blood tests and cyst development through an ultrasound. The insurance form I think only asks for conditions that could give the traveller a problem when on holiday (short term) but with PKD the symptoms don’t come on suddenly or if at all. It’s only the high blood pressure condition that could cause a problem.

    Good luck with it all... it’s a slow developing disease I was diagnosed when I was 16.. I’m 57 now and kidney function still normal! Very manageable with lifestyle and drugs.

    Regards

    Andrea 😌

    Reply

    Thanks so much Andrea,

    That's very encouraging to hear. Mark is 25 and only had symptoms early this year which progressed to him seeing the nephrologist (mainly as he'd had kidney reflux for several years when he was very young) so the fact that it's progression is slow is really reassuring. Can I ask ..do you follow a special diet at all?

    I'm 58 and my husband and I are waiting for a scan but neither of us know of any previous problems in the family.

    Sorry for the questions!

    Kind regards,

    Jackie

    Reply

    Hi Jackie

    Ask away!! I don’t follow a diet as such but I’m mindful of what I’m eating. The main thing is to keep salt at a minimum ie very little or no processed food. Also to not consumed too much food with potassium in ie bananas. Keep protein foods to a minimum too. Eat plenty of fruit and veg but the most important thing of all is to not smoke as PKD patients have a connective tissue throughout their bodies and it’s important to keep blood vessels and arteries healthy as possible. I do have wine but any alcohol does raise BP no try not to over indulge.

    There are different strains of the disease and although I have it from my Mum I also have inherited genetic modifiers from my Dad which are slowing it down

    Good luck with your scans and if you’ve reached 58 without any symptoms your likely to stay well yourself but perhaps not be a carrier also.

    Hope this helps and please ask whatever you want as it helps when your new to all this.

    Regards

    Andrea

    Reply

    Thanks Andrea, so helpful! I'll let you know how we get on with the scans and genetic test but it may be a little while yet!

    Take care and thanks again,

    Jackie 🙂

    Reply

    Hi Jackie

    Your welcome and good luck with the forthcoming tests

    Regards

    Andrea

    Reply

    Thanks Andrea! 🙂

    Reply

    Hello Jackie, given your son's age, he shouldn't have difficulty getting insurance.

    A number of people have used this comparison site medicaltravelcompared.co.uk and also allcleartravel.co.uk. I have personally used insurancewith.com and the price is v reasonable.

    He should wait until he's had the results of his tests because one of the questions is usually "are you waiting for the results of any tests".

    Also, after taking out the insurance, if he starts taking, for example blood pressure medication, he should let the insurers know.

    Also, you can find out more about PKD on our website pkdcharity.org.uk/, where there's a series of health information leaflets including on diet and lifestyle.

    All the best

    Tess

    PKD Charity

    Reply

    Hi Tess,

    Many thanks for your reply and information.

    I'll try the insurance companies when he's had his results back as you suggested.

    This is a very helpful website!

    Thanks again,

    Jackie

    Reply

    I have pkd and went with virgin travel insurance only cost me 14 smackers. Sorry to hear your son has it.

    Reply

    Thanks Dean,

    We got some with the post office and that was only 15 so was very pleasantly surprised! Not what we expected at all.

    Thanks for the info!

    Take care,

    Jackie

    Reply

    Hi Jackie, the main thing you will find out about PKD is that it affects everyone differently. I was diagnosed age 60 following a scan which was for something else. I have never had any symptoms - blood pressure is normal, no proteinuria, no pain etc and I am very healthy. However, all the usual travel insurance companies said they would not cover the PKD. Yes, they would offer insurance, but any claim that could be remotely connected to the PKD wouldn't be honoured. As I travel regularly to the USA I have an annual worldwide insurance from Staysure which cost around £150PA (though they added another £120 last year because I had two chest infections!) I was turned down for life insurance earlier this year due to the diagnosis. My daughter who is in her 30s has just applied for life insurance and the company is insisting she is tested for PKD, because I have it. We can trace no evidence of PKD in my family, so I may be one of the 10% which just occurs and isn't passed on by a parent.

    Hope that helps and best of luck with your family's PKD journey

    Reply

    Hi Chrissy,

    Thanks for your reply. We used to travel to the USA each year and hope to go late next year so thank you for the information. We've got insurance for Mark for this short trip to Poland with the post office and it was around £15 but like you say, they wouldn't cover PKD as he's still awaiting the results from the genetic test so not sure if they would once we have them back either. Very good in the sense you didn't have any symptoms before you were diagnosed and are very healthy ..that's really encouraging. Seems for quite a few people it's very manageable. I hope your daughters test is negative... We too have no trace in our family .. my husband and I are having scans in a couple of weeks so it could be that Mark is unfortunately in the 10% . Hope all continues to be well for you and your daughter.

    Best regards,

    Jackie

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