"With an orphan disease, the support can be hard to find. I found that support at the MPN research foundation." - Juan Alderete, PV '06. On Hydroxurea/baby-aspirin and living a quality life! Photo credit: Marianne Williams

Patient Stories


ET, PV and MF are orphan blood cancers, which mean they are rare compared to other conditions. It's important to hear from people living with these diseases as well as the people who take care of them. We've compiled some stories from patients around the world. 

Silvana - Essential Thrombocythemia, The Netherlands

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T december 19th 2011, about 3 weeks after I had a bone marrow biopsy. I've had the experience of having dual cancers (ET and thyroid cancer).

Jean Diesch-Support Group Leader ,PA

 Jean shared her experience as a Support Group Leader. Prepare to be inspired!

Julie Libon knows that with research, there is hope for people with myelofibrosis

Tuesday, August 19, 2014 was a beautiful, sunny day in New York City. Julie Libon did not know it that morning, but she was about to experience what all MPN patients go through.

Elizabeth and her daughter Page are getting crafty with some inspiration from Taylor Swift - ET

Elizabeth was diagnosed with ET at 40. Her daughter Page found solace in the music of Taylor Swift.

Frances - A long road to diagnosis with ET


It all started shortly after the birth of my daughter (December 2008): a chronic and slowly worsening feeling of pain in my right shoulder, then my right arm...

Delaney - The Trouble with K: Questions on ET and nutrition   

I am a 37 year old female & mother of three. I was diagnosed with Essential Thrombocythemia in March of 2012. Read more... 

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 ...

* These stories do not represent the opinions of the MPN Research Foundation. Please consult your doctor on anything you read here.







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