I am 17 and I am the youngest person in new Zealand with polycymthemia, does this mean I can die you

No it does not, get that silly thought out of your head. With proper treatment u can live into old age same as anyone else. I was born with it and I'm almost 60. Smoking drinking drugs are things u will have to do without and that not such a bad thing.

A great many folk are not diagnosed with this illness until they have a medical problem. You like me was diagnosed very early on. One warning. If you are prescribed hydrea , use a high factor sun cream , as it will brown your skin very easily. That might sound great but it isn't. Take care and stop worrying needlessly

I am truly sorry that one so young has this disease....

First go to a doctor who is qualified for this disease.

I personally has had 2 other different cancers before Poly V appeared and

I am in my later years.

From my personal experience I have a routine which appears to be working for me.  Walking, drinking a lot of water (a lot), having lab work (HCT) to find if you

need a phlebotomy and I do NOT eat any red meat or other foods that are high

in iron.  I do Not take any meds that could be connected to Poly V. and may be recommended by your specialist.

Good luck!!

One never knows when one will die so do NOT stress yourself about this

Maybe add prayer to your routine.  Evenyone has a challenge with their health some in the early years some later in life.

Good luck!!

Amy to die is promised to us all but dying of PV is not likely.

I too had the same fear when I was diagnosed in 2008. I jumped online and read all the scary stuff.

With my heart in my mouth I went to see my specialist who assured me that most of his patients will probably out live him, and if they died it was not due to PV.

This condition is really not all that bad once it is well managed. Venus sections and a healthy lifestyle is all you really need to live a normal long healthy life.

As for pregnancy I had terible bleeding all my post pubescent life. So my PV was not picked up until after I had a hysterectomy. I was told it was somthing I would have had before, but went undetected due to my heavy blood loss.

I had a few problems with both my pregnancys but non were due to the PV.

Life your life to the full and cherish every opportunity and seize every moment.

Well, you've already had some very sound advice from others and there is lttle one can add to this.  You are just as likely to live to a ripe old age than depart this earth too early.  Visit your doctor regularly as required, do what they suggest and do ask them any questions you find necessary.  Your disorder requires regular monitoring by your medics to ensure you receive the best possible treatment.  PV can be an uncomfortable disorder if it is not controlled but is rarely life threatening in itself.  Just take care of yourself, live sensibly and enjoy life without concerns of PV always in your mind.  There is much to live for in the years ahead of you.  Best of luck.

Hi Amy

Take the positive that you were diagnosed early. The majority of PRV people are diagnosed later in life after a major health issue. l was only 30 when diagnosed and only because l'd been a blood donor.

l'm now 56 and my treatment consists of an aspirin a day and roughly 4 phlebotomies a year. (same as if l were still a blood donor)

Who knows with your young age there may be a cure one day but even if this doesn't happen as you can see from the other postings this condition shouldn't stop you from doing 99% of things you want to do.

Try and keep yourself fit and healthy, eat a balanced diet, drink plenty of water and live a happy and fulfilled life..

There's a new drug being trialed around the world called roxilitnib. It looks promising so far and not as dodgy as hydrea. It's not a cure but it's not far off it. Ask your consultant if your suitable for the trial. I myself didn't take part in the trail as there where aspects to do with monitoring I didn't fancy ( needle phobia) . Just a thought.

DEar Amy, You brought back a memory I had the 1st time I saw my Hemotoligist/Oncoligist as I asked him 1st thing OK Dr. am I going to die? He said "No you are far from dying" and boy did I have a ton of bricks lifted off my shoulders.

As long as you keep up with your blood work and get your treatments when ordered you will be fine..  No matter what is the cause bone marrow disorder, or some other reason except some drug use like testosterone replacement therapy(which I think we can rule that one out on you the treatment is the same, my Dr. tells me. 

Please dont let this get your down as once your blood levels get where they need to be everything is rutine from there. However I do read alot where they say this illness has no symptoms and I disagree as I do have symptoms like my skin splits open and I don't feel it till I wash my hands then it burns real badly. I have to clean it with peroxide or Band Aid wash and use a cream to kill the infection. I can also feel when I need a treatment. 

If you ever need a friend to talk to about this just know you have an open heart and ear right here. Good luck

Marty aka Bug