Patient Story: Helene

Helene Myelofibrosis (MF)

"When I was first diagnosed with primary myelofibrosis in April of 2008, I was devastated and cried for months."

Living with MF

When I was first diagnosed with primary myelofibrosis in April of 2008, I was devastated and cried for months. I noticed my legs were tired one night at a dinner dance but that was my only symptom. My actual diagnosis came when I went for my annual physical a week later and my platelets were 100. Normal is between 140 – 400. My doctor of many years immediately sent me to a hematologist who did a bone marrow biopsy, or BMT. Living in NY, I went to Mt. Sinai to see another Hematologist, Dr. Lewis Silverman. Another BMT was done in July and I was entered into a study.

Eventually I got past the initial shock of having an incurable condition, though it remains in the back of my mind. I happened to catch a program by Randy Pauch who was dying of Pancreatic Cancer at the time. The show - titled The Last Lecture – couldn’t have come at a better time for me. Inspired, I decided to make every day the best day it could be. Unfortunately I also suffer from migraines which are devastating and no matter how good your intentions, a migraine will ruin everything.

I decided to no longer wear frumpy clothes. Instead, I’ll wear good clothes that show my figure. I’ve always worn make-up and done my hair. My husband always complains about the fancy pillows on the bed and having to take them off at night. But as long as I’m healthy I am motivated to make the room look good. I realized that at some point there will come a point I won’t be able to do it. Getting satisfaction out of small improvements in life makes each day just a little bit better.

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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