Undiagnosed and rare conditions
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PKD, anyone out there familiar with this?

pippaTpippaT Member Posts: 5 Listener
Hi, my name is pippaT and I have Polycystic Kidney and Liver disease. Is there anyone here that has the same or cares for  someone with the same. I would love to find other PKDers to chat to and compare notes etc. Also having the all too familiar problems with PIP and ESA,  but that's another story! 


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    Welcome to the community @pippaT

    @Manchestergirl66 has mentioned Polycystic Kidney Disease before so maybe you can connect with them :)

    I also found the PKD support website that has a support number and support groups.

    If you need more support on benefits you can check out the PIP category and the ESA catoegory.

    We are a friendly group though, so do jump in and get involved, if you have any questions, then please do let us know.
    Senior online community officer
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,644 Disability Gamechanger
    Hi @pippaT  Welcome to the community! :)
    Disability Gamechanger - 2019
  • Manchestergirl66Manchestergirl66 Member Posts: 7 Listener
    I was born with this what would you like to know 
  • pippaTpippaT Member Posts: 5 Listener
    I don't need to know anything in particular,  I just hoped to find ther people with PKD that I could chat to. It can be a lonely disease. X
  • pippaTpippaT Member Posts: 5 Listener
    I just wanted to find others with PKD to chat to. It's a lonely disease. X
  • Manchestergirl66Manchestergirl66 Member Posts: 7 Listener
    Very true it is  have you had your lungs checked because one of the things with it are under developed lungs   people don't understand how susceptible you are to bugs etc and not able to do normal stuff that they take for granted 
  • pippaTpippaT Member Posts: 5 Listener
    I wasn't diagnosed until I was 30, so wasn't born with it. I have kidneys the size of rugby balls and a hugely enlarged liver. I had a liver resection 3 years ago. I'm under a great specialist at QE Birmingham.  My daughter, 24, was diagnosed 2 years ago, my dad and my elder brother also have it. I'm battling with PIP and ESA at the moment even though I was medically retired 6 years ago. Sorry for the ling winded reply, just good to find an ally. X
  • Manchestergirl66Manchestergirl66 Member Posts: 7 Listener
    I know how you feel and it probably scared the hell out of you  I'm one of the few people in the world that have got past the age of 30 and have children  it's sad that you have so many family members with it when I talk to people they are amazed that my kidneys look like a bunch of grapes as opposed to the normal look. I suffer with tiredness alot and also medically retired 
  • pippaTpippaT Member Posts: 5 Listener
    It surprises a lot of people when you explain about the disease, doesn't it. I'm 51 now and my kidney function is declining but I remain upbeat because you have to. The biggest downside is I can't go to a family member for a kidney when I need one, how inconsiderate of my family to all have it! I suppose it will stop us all fighting over one though 😊
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