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Are there any young sufferers out there??

Posted , 12 users are following.

Nikita38
Nikita38

My son has just been diagnosed with Polycythaemia Vera.  He is 20.  He has the JAK2 mutation.  Is there anyone else out there that was under 30 when diagnosed?

0 likes, 29 replies

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  • Hansy
    Hansy Nikita38

    Posted

    Hi Nikita,

    I was diagnosed last year at 33 (so not so young!) but I had symtoms for a good decade beforehand (headaches/migraines etc). Since being diagnosed, things are much, much better! smile

    • Nikita38
      Nikita38 Hansy

      Posted

      Thank you for your reply Hansy.  May I ask, are you male/female?  What treatment have you been put on?  My son collapsed and had episodes where his eyes rolled back in his head, so not typical PV symptoms.  But after blood tests the diagnosis was PV and everything else was ruled out.  He was diagnosed last week, so, so far he has had venepucture and been put on asprin.  There has been talk of interferon, but I am unsure about this as he is so young.

      kind regards 

  • Hansy
    Hansy Nikita38

    Posted

    Hi Nikita,

    I'm female, currently having venesection every 3 months (it was more frequent to start with) and I take low dose aspirin daily. I was only diagnosed in September, and my levels aren't quite in the 'normal' range yet, but they are getting there. I'm hoping not to have to take different medications but we'll see...

    It sounds like your son has been through it! Hopefully he'll start to feel better soon. I'm in Nottinghamshire and have a lovely haematologist who explains things really well and answers my questions. I really can't fault the NHS and hope you, and your son, get on well too.

    I am so pleased I was diagnosed and started treatment because I have felt a millions times better! Fingers crossed for you smile

    • Nikita38
      Nikita38 Hansy

      Posted

      We are in Yorkshire, and I must admit the Haematology department have been really good too.  He is to have venesection every week at the minute, but it's helpful to know there are others out there who are young too.  Thank you.
  • clem19079
    clem19079 Nikita38

    Posted

    I'm 56, I have had it since birth, I was diagnosed a round 30 though when I learned of the symptoms I can remember them as far back as infancy. For some reason I am still here when I shouldn't be by all accounts. It's treatable but not cure able. I take hydra and a spring though at times I still need venison ted. He's a young lad so warn him that cig s and alcohol are off the menu. He will be getting little enough oxygen through his blood as it is. I'm proof if needed that if he follows the rules he should I hope be fine. It can be debilitating at times but themselves the cards us guys are dealt. Be well don't worry to much.
    • Nikita38
      Nikita38 clem19079

      Posted

      Thank you for your reply.  He does smoke, I have told him to stop. He was diagnosed last week,  Did you used to smoke before you were diagnosed?
    • clem19079
      clem19079 Nikita38

      Posted

      Took me 7 yrs to stop. He will start to notice that he will be choking more and I ain't talk in smokers cough almost like an asthma attack he will be physically sick every morning so times while he enjoying a smoke. He really needs to try to stop ( I sound like a nagging wife) he is starving himself of oxygen . No one can make anyone stop smoking . But he has to use nicotine patches.
  • Charhorn85
    Charhorn85 Nikita38

    Posted

    Hi Nikita! My name is Charlotte and I am 29 years old. I have had symptoms that have caused concern since I was 15 but more so in the last 4 months! Last week I was finally diagnosed with PV! Just waiting for my Jak2 tests to come back! Have just come out of hospital after an appendix removal (non related) and have not started treatment of any kind as of yet! My next appointment is on the 16th of April! I have given up smoking (16 days so far) and haven't had alcohol since August ( my birthday) so hopefully that's helping. There is a Facebook page that you and your son can sign up to which is for sufferers and family/ friends and has been a major support for me!
    • ron13447
      ron13447 Charhorn85

      Posted

      Hi Charhorn85, what symptoms did you have since age 15? Thanks!
  • TFaulkner1974
    TFaulkner1974 Nikita38

    Posted

    Hello,

    My son was recently dianosed at age 19 with PV. The Oncologist is going to perform a Bone Morrow Biopsi this week to check for the JAK2 mutation. My son has been having phlebotomy once weekly. His red blood count runs around 53 before each phlebotomy. The doc told my son it is rare for a 19 year old to be diagnosed with PV

    • clem19079
      clem19079 TFaulkner1974

      Posted

      He will be sedated during biop, he will be in a haze. When I got mine I knew something happened but wasn't sure what. Don't tell him but he will have a sore but for a while.
    • Nikita38
      Nikita38 TFaulkner1974

      Posted

      My son does have the JAK2 mutation, but they got the results from a blood test and he has not had a bone marrow biopsy done.  His blood count was also running around 53 for a while but after 5 weekly venesections [phebotomies] it came down to 45 so he hasn't had one for 2 weeks now.  Where are you located, we are in Yorkshire, England.
    • Nikita38
      Nikita38 clem19079

      Posted

      Thank you clem, I'll only tell him he won't really know whats happening wink

       

    • Bamamom
      Bamamom TFaulkner1974

      Posted

      My son is 19 years old and we just found out he has PV. The oncologist said that he was to young to have this disease. We are having alot of test to try and find out what has caused the PV. My sons hand and feet are going num and his chest and back hurt alot. He also has trouble sleeping and wakes  up and cant breath. 

       

    • jamie.bell
      jamie.bell Bamamom

      Posted

      Bamamom,

      I was 16 when I was diagnosed (27 now). The doctors borderline threw me a party because of how young I was (they had never seen anyone as young as I was with PRV). I had the exact same issues you said your son is having. Numbness in hands/feet, chest pains, shortness of breath, and impossible to maintain sleep schedules (among others). I can say that while it never fully goes away, it most definitely becomes manageable if you keep up with the phlebotomies. Stay focused and committed to treatment and eventually the frequency of phlebotomies will taper off (mine are ~6 months apart now). I used to get them done once a year, but it crept up on me over time. 6 months seems to be the magic number for maintenance (for me). Once you have it under control, you will barely notice the side effects until around the time of the next phlebo.

      Good luck with your son and I hope everything works out well.

    • jamie.bell
      jamie.bell Nikita38

      Posted

      Nikita,

      When I started getting my first phlebos, I was weekly as well for almost 3 entire months. I am now down to once every 6 months. There is light at the end of the tunnel, just keep at it! Good luck.

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