Patient Stories

Since our start in 2000 we have come across many amazing stories of myelofibrosis patients. They have shared their tales of battling MPN, trying different treatment options and simply what it’s like to live with this orphan blood disorder. We’ve also heard from the spouses, family and friends who share the burdens of worry and care. Below is a selection of patient stories. If you are interested in contributing your story contact us at or 312-683-7243.


I received my official diagnosis of Myelofibrosis in November of 2008 at the Mayo Clinic, Rochester. What a confusing time – I did not know anything about this disease and everything I was told or read was so scary. My doctor laid it on the line telling me they did not have a treatment or plan and even told me my median life expectancy was 6 years! There were options – but I had to pick – no one to just tell me here is what we are going to do to make you better. I’m a breast cancer survivor and so I kept falling back to when I was diagnosed with breast cancer – there was a plan of action – here is what you have, and this is what we are going to do. I’m a list person; I like to have a plan. There was no perfect plan. Read More >>


I was diagnosed with MF 14 years ago at age 65 when my hgb dropped below the normal minimum of 14. No symptoms for several years as my hgb stayed above 10. Then I tried Hydrea, Procrit, Danozol/Prednizone. Nothing much helped. I began transfusions in 2007 when my hgb dropped below 8. Read More >>


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. Read More >>


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