VivL aged 69 Despite months of severe headaches which I went to my GP about, nothing was done until I had a transient ischaemic attack accompanied with numbness and tingling in my right arm and face. I was 39, very fit, played squash 2 or 3 times a week, swam every morning and walked the…
Uschi K-R aged 69 I was born in Germany but have been living in the UK for the last 45 years, where I raised my family and worked as a teacher of Modern Foreign Languages. In 2013, after a routine blood test with my GP, I was told that I had a slightly elevated haematocrit…
Suzie W, 46 years old. I was diagnosed with ET in 2012 while serving in the RAF. Although my platelets remain at around 1200, I am lucky to be classed as low risk, and I only really suffer with fatigue and itchy ‘burny’ skin. I managed to stay healthy and keep myself from being medically…
Steven S Aged 76 Managing my MPN against a plethora of medical issues I was diagnosed with ET about 30 years ago. This progressed to PV about eight years ago. I also have another kinase-based disorder – Neurofibromatosis type 1 that complicates things a bit. NF1 is a non-driver mutation for MPNs, increasing my risk…
Melanie C aged 55. In March 2020 I had difficulty breathing and was admitted twice to hospital within four days. This was likely the result of a deep vein thrombosis, possibly not the first and resulting in a diagnosis of having had massive pulmonary embolisms for which I was put on blood thinners. Following this…
Mark R – aged 50 Using the bucket of energy wisely. I was diagnosed with polycythaemia rubra vera in 1999, which progressed to myelofibrosis in 2019. This was confirmed by a bone marrow biopsy which showed I am JAK2 positive. When I was first diagnosed in 1999, I was devastated! My wife and I had…
Lisa H aged 55 In 1994 I visited my GP as I was very lethargic and experiencing strange transient flushing episodes even after drinking just a glass of wine. My platelet count was 1.5 million and after numerous tests, I was eventually diagnosed with ET aged 27. My haematologist prescribed aspirin plus Hydroxycarbamide and…
Kimberley R age 37 In 2010, at the age 26, following the birth of my son I suffered a major deep vein thrombosis (DVT) and multiple pulmonary embolisms – clots in my lungs. I had to stay in hospital for several weeks, during which time I suffered a further two DVTs in my right leg.…
Katy B, aged 43 Taking charge. When I was first diagnosed, I had been feeling run down for a long time. I felt constantly tired, and initially I was told I had viral arthritis and depression, but eventually was diagnosed with an iron deficiency, but with too many red blood cells. When I was diagnosed…
Kathie – aged 45 I enjoy a very fulfilling career. I am also a daughter, a partner, and the mother of three beautiful children, ages 12, 10 and seven. I have suffered from ET since at least 2000 and now have Post ET-Myelofibrosis which progressed in 2017. However I recall having ET symptoms as young…