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Real stories

People with MPDs tell their stories of diagnosis, treatment choices, life impact and survivorship.

  • Surviving a transplant

    Richard relates his harrowing journey through myelofibrosis and bone marrow transplant.

  • PV treatment quest

    Krystyna experienced several clots. Her platelet counts "looked like an earthquake reading".

  • Diagnosed at age 12

    Gina was diagnosed with ET at age 12. Now 24 she explains how having an MPD has changed her life.

  • Keeping the faith with ET

    Alisia's has faith has kept her going through the ups and downs of diagnosis with ET.

  • Two decades with PV

    Helen has managed with PV for 19 years thanks to excellent medical care, holistic and conventional.

  • Cyclist grapples with PV

    John used to experience extreme fatigue. He has eliminated the problem with a precise training regime.

  • Stroke hit at age 36

    Jon's story started one day when he felt numb down his right side.

  • First symptom foot pain

    Charlie's doctors decided to amputate. Then they took a blood sample and were shocked to see the result.

  • Survivorship after BMT

    "I was shocked to need 21 months off work. The next shock came when I did go back to work."

  • Diagnosed while pregnant

    It was a shock to be diagnosed during pregnancy and a rough road to delivery, but all went well in the end.

  • PV diagnosed age 17

    Jo was diagnosed with ET at age seventeen. She was left feeling totally isolated and afraid.

  • PV leads to stroke

    After a stroke and a diagnosis of PV Laurie asked his consultant: What's my prognosis?

  • Inhibitors slow MF

    "When my myelofibrosis worsened, I sharpened my plan of attack for managing the condition.”

  • Medication pros, cons

    Tim felt exhausted tired and apathetic after the birth of his first child. His brother was concerned.