It Is Not a death sentence. Educate yourself andplease do n ot feel this is the end. Life is a death sentence, we know when we are born we are going to die some day. Unfortnately some sooner then pthers. They told me in the very beginning oh maybe 3-5 years.(That was 11 years agoo) Heck yes I was shook up, But then I got to work to find out all I could about the Illness. It is Ok to get 2nd Opinions It is ok to hire a new Dr, find one that best suits your personality. Ask Lots of questions and if you do not like the answer, ask some one else. You have to believe in your self. Yes we have lots of bumps on the road, but keep moving if you quite ir will take over you. You are the driver of your bus you chose who is along for the ride. God Bless andGood Luck.

My biggest problem is people look at me and think nothing wrong with her she looks just fine I try to explain to him that it's rare and that I look great on the outside but I'm lousy on the inside most of them just give you a little tiny smile and say well good luck

Yes, no one knows about this disease. It is so frustrating. Even my own husband doesn’t want to believe that it is some kind of cancer. But at least thanks god it will not kill us. We all have to take one day at a time. I find it by keeping busy and stay active, I manage the symptoms better.

The most common misconception in the medical community and elsewhere is about how wide ranging the symptoms of a MPN can be. There is so much more going on than the risk of thrombosis. People with MPNs can also experience hemorrhage, microvascular symptoms, many constitutional and secondary symptoms that are not well understood. It is far too common for MPN patients to experience medical gaslighting, having their symptoms discounted or dismissed, even when they are MPN related. We are fortunate that the understanding of MPNs is growing and we have the opportunity to be our own best advocates.

I've had that all my life "Hump! there's nothing wrong with him!" usually the older generation, now I've reached that particular old age, people in the same age range as myself! Even some of the Doctor's eye me up and down, then they look at my Medical CV, replies like "You've been through the wars, have'nt you?" "My! you are not too well are you?🙄" others squint their eyes at it, and shake their head! My own GP calls me a "one off!", I'm not his favourite patient!🤨