Patient Stories
Andy - Confusing diagnosis but still staying active at high altitude
In October 2002, at the age of 50, I took part in a cross country bicycle tour. In one month our group of 25 riders cycled from Los Angeles to Savannah, GA, averaging 110 miles each day. A routine physicial found an overabundance of platelets... Read more
Lina - ET patient who knows you don't always "look" as sick as you feel
During my freshman year of college, I was an “otherwise healthy” student, going about my life like anyone else. To look at me you would not know that there was a problem. Inside me was a different story. Read more...
Helen - Living with MF
When I was first diagnosed with primary myelofibrosis in April of 2008, I was devastated and cried for months. Read more...
Rob - Just running with PV
I am a 54 year old athlete. I run numerous marathons a year and currently try to put in 40-60 miles per week. There is no doubt that my blood dictates many of my workouts and races.Read more...
JoAnn - Parent to a PV patient
Our daughter was diagnosed with polycythemia vera at 17. Hematological malignancy? Blood cancer? Incurable? What would that mean for her future? Read more...
Ron - PV
At the age of 38, I went to my primary care physician because I had been experiencing a chronic cough. I didn’t really feel sick nor did I think I had a cold or flu; just a cough. My physician did the usual physical exams and ordered routine blood work. Read more...
Sarah - PV and starting a family
A few years after getting married my husband and I decided to start a family. I remember mentioning this fact quite casually at my next annual physical and that in response my doctor, equally casually suggested I have a simple blood test to make sure I wasn't going to begin a pregnancy already anemic. Of course, because of my as-yet-undiagnosed PV the counts came back completely the opposite of what we all expected...
Vivienne - PV
My name is Vivienne and I have PV. I was diagnosed in April 2001 and set out to find out all I could about this rare illness that I had never heard of! I was referred to a local Hematologist and have been very satisfied with the care and advise that I have received from him. Read more ...
Julie - ET
I was diagnosed with ET in 1987 at the age of 30 after experiencing an episode of alexia (word blindness). I had noticed one night at dinner that the label on the ketchup bottle appeared to be total gibberish. My vision was perfectly clear. Read more ...
Lorraine - ET
I worked for a hospital as Executive Assistant to the CFO from 1990 - 1997. We had to have annual exams and in 1995 they noticed my platelets were high -- around 450,000. They told me to keep an eye on them. Read more ...
Larry - PV
I have PV with negative Jak2, first diagnosed July 2008, after my Brain tumor (Meningioma) operation March 2008. I had 2 blood clots in my legs and hematoma while in the hospital. Read more ...
