Polycythemia Vera

I have recently been diagnosed with Polycythemia Vera.  I know that my prognosis isn't good.  Do you know of any research studies going on ANYWHERE?  I know that 11 - 15 years is a long time, but when that is likely the only amount of time you'll have left with your loved ones it really isn't so long.  I'll be lucky to make it to 45 or 50.  There has to be something out there that can help me.  I mean that's just a general prognosis, what if I stroke out sooner than that?  Or get leukemia sooner?  Please help me.  Thank you!

[Lisa Kessler, MS, CGC]

Coping with a recent diagnosis of a chronic illness can be extremely difficult, and it may help to talk with others who have been in similar situtations.  There are virtual support groups that may help you to learn from other’s experiences.  

As you know, polycythemia vera is an acquired disorder of the bone marrow that causes too many cells in the blood to be produced.  This condition usually develops gradually.  There is a risk for AML (a type of leukemia) and stroke.  

There are several research studies available for people with polycythemia vera, look in clinicaltrials.gov for more information.  

[lov2laf]

A related discussion, Polycythemia vera was started.

[villager113]

A related discussion, foods to avoid with Polycethemia vera was started.