I know a lot of people want to know about this disease and I have read some posts where people are misinformed. Polycythemia vera is different than just polycythemia. With Polycythemia vera you have a life span of up t 15 years. With polycythemia you can live a normal life span.

Hydrea is risky, i WATCHED MY MOTHER DEVELOP ACUTE MYLOGENIC LUEKEMIA. Or how ever you spell it. I do not understand why some of these doctors are not telling the risks involved with this medication.

It is a very difficult disease. I watched her have vision problems in the beginning then her personality changed dramatically. The pain ...The depression. I now am having vision problems and am only 33. They say it is not hereditary but I sometimes wonder. I know the heartache. I sometimes feel so scared an basically have panic attacks just wondering if I too have developed this horrible disease. I am scared to go find out if I have it...I almost do not want to know...Bless everyone on here and their families. Not everyone understands what you are going through. They need to find a cure for this. Or better medication thats for sure. Anyway I had to vent because this disease is so frustrating.....love to all .....obxgirl.