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?
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! 
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
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
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.
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.
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?
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.
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!
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
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.
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.
Thank you clem, I'll only tell him he won't really know whats happening 
Hi Charhorn85, what symptoms did you have since age 15? Thanks!
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.
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.
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.
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.
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.
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 .