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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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  • clem19079
    clem19079 Nikita38

    Posted

    I was born with PV although i was roughly 30 before being diagnosed. I remember the ymptoms as far bac as childhood though i never knew why, just that i never felt well of able to stick at anything no matter what it was. Between itching headaches tiredness and lack of concentration as well as dizeness. I meant i had to give up all my favourite vices. Once the doc's get a grip of it and get the treatment right he can have hopefully some sort of normality. Best wishes.
  • Bamamom
    Bamamom Nikita38

    Posted

    My son is 19 yrs old n we just found out that he has pv. We are going through about of test to try and find out what is causing it. We are going for more blood test and a ct scan tomorrow. The blood specialist doctor said that they would have to do a bone marrow biospy after these test are done. He has been having problems with his hands and feet going num and having alot of problems with sleeping at night. He wakes up at night and cant breath. He has alot of chest and back pain. I wish they would find out what is causing this and fix it so he would get to feeling better. He is way to young to be having all these problems. 
    • Nikita38
      Nikita38 Bamamom

      Posted

      Hi, do you like in the UK?  My son who is 20 just had blood tests and a brain MRI.  The brain MRI came back normal so he was discharged from the neurologists care.  The blood tests were abnormal and the JAK2 blood test came positive.  He has not had to have a bone marrow biopsy.  He complains of numbness mainly in his hands, but before treatment when his blood levels were high he has lost the use of his legs and collapsed.  He has had chest pains and been admitted to hospital to check for a PE [blood clot in lungs] or even heart attack. All of this is very scarey for parent and son.  I must say that now after 7 weekly phlebotamies/venesections, now that his levels have come down he is feeling much better and they have moved him on to fortnightly venesections.  He just takes aspirin.  But I also give him a high strength cod liver oil every day as it has blood purification properties, but that is my idea not the doctors.  I hope they sort your son out,  but I agree it is way too young to be coping with this.  My son also smokes, he has tried to stop but not succeeded so far.  It is all a worry.  
    • clem19079
      clem19079 Nikita38

      Posted

      He cannot take anything that contains iron so if the oil has iron content u must stop it. The odd bit of red meat is okay but he can't take anything iron based. He might at some point be offered hydroxycaramide, that helps but has side effects of its own. He will hopefully after a short while be getting fewer veneration. If he smokes and drinks he will have to consider whether the risk is worth it. Although jak2 is a faulty gene it don't help to be indulging in booze n fags.
    • Bamamom
      Bamamom Nikita38

      Posted

      We live in the US. My son doesn't smoke. I took my son to the doctor for a kidney infection and they found out he had pv. They have had him on a aspirin for 6 months but it hasn't lowered his blood levels. The doctor keeps doing test to try and find out what it causing it. Everything has come back negative so far but he seems to get feeling worse the longer they wait. I hope they find out something real soon. The not knowing is the hard part. I pray for you n your son .. Best wishes !! Keep me posted how he does .
  • paul250360
    paul250360 Nikita38

    Posted

    Hello

    I am now 55 but was diagnosed at 30 after being a regular blood donor for 10 years. I've lived a normal unaffected life until 5 years ago when a basketball injury (ruptured Achilles) precipitated a PE. Despite that trauma I've had excellent health system since. 3 monthly venisections and a daily low dose aspirin..

  • jesymorgn
    jesymorgn Nikita38

    Posted

    I was wondering the same thing! I'm 33 amd was just diagnosed for the last year I thought I was going crazy. Passing out constantly, kidney infections every month and I have no energy. I'm a vegetarian and thought I was anemic. After blood tests my doctor freaked out about my hemoglobin count and I mentioned my grandfather was polythysemia vera. After a few tests I was diagnosed. I have yet to see a hematologist yet. My dr told me to to and donate blood asap. UT my heart rate was 150 and that was too high. Normal for me since I have a whole in my heart and irregular rapid heart rate. It's been 5 days since I was diagnosed and I'm freaking out. I'm bruising everywhere and making an appointment tomorrow with my Dr to rush getting to a specialist. My grandfather had a stroke from this disease survived and died of cancer at a young age. I'm a single mom of two teenage boys and I know very little about this disease.
    • paul250360
      paul250360 jesymorgn

      Posted

      Hi Jesy

      PRV is generally not genetic but maybe it has been passed down from your Grandfather. Once you have seen you specialist (hopefully either an oncologist or haematologist) a treatment plan will be mapped out. Luckily l was a blood donor which was the reason why l got picked up having an abnormally high haemoglobin count. In Australia they won't accept blood from our blood bank from people with PRV even though it is "charged" with additional red blood cells. l have my venisection (blood donation) procedure done from the day centre oncology ward at a local hospital. (co-incidentally yesterday). The day centre have many patients having chemo and l count myself as being lucky as i'm in and out in less than half an hour feeling fine.

      As l've mentioned in earlier posts l've had diagnosed PRV for 25years and for the most part live a very normal life. l believe my tinnitsus is a complication but it could also be heriditary as my father had that but did not have PRV.

      Good luck and hopefully your blood pressure will settle down. Mine yesterday was 114 on 79 which is pretty good. l do exercise (mainly walking) every day.

  • lijuan7002
    lijuan7002 Nikita38

    Posted

    Hi You can view the latest med informaton about PV from Dr. Richard T. Silver research

    In his study, I think the PV is curable in the furture 

    And you can read the reference as follows:

    The 1st Annual Intemational Symposium on Myeloprolifertive Neoplasms(Saturday, Jan 9th, 2016)

    Best wishes and be well.

  • jamie.bell
    jamie.bell Nikita38

    Posted

    Hi Nikita,

    I am a male who was diagnosed with PRV when I was 16 years old. I am now currently 27, and still having blood lets. I am also part of the 1/20 who test negative on the JAK2 test, but do indeed have PRV (this caused many problems when it turned up negative). I would be happy to answer any questions you may have, as it seems your sons scenario may be similar to my situation. 

  • waynne57
    waynne57 Nikita38

    Posted

    Hey, i was diagnosed with polycythaemia ruba vera at the age of 10 and i am 17 now (male), The treatment i get is once a month go to the hospital and get 20ml of blood out for every kilo i am. both illnesses are cause by the bone marrow, my sympotms were if i got to hot, did to much exercise or nervous i gets this really bad pincing, burning pain all across my forehead, spine and chest it feels like somebodys poking needles in all around me. I hope this helps you,

    Thanks

    • clem19079
      clem19079 waynne57

      Posted

      I use emla cream (it's an anesthetic used by folk who have a fear of needles) I apply it using a cotton bud on the spots that are most painful. It takes about 2o or 30 min to work but it helps me. I know what it's like, for some strange reason it happen to me during the night. Hope this is the answer for you. There are also over the counter creams that have mild anesthetic in them, if your doc won't give you emla cream.
  • paoloNarciso
    paoloNarciso Nikita38

    Posted

    Hi Nikita

    I was diagnosed with PV october last year, I'm 21 years old.

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