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…
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…
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…
Colin S – aged 67 In 2003 a routine military blood test indicated a haematocrit over 50 which led to an appointment with a haematology consultant for investigation. The initial thoughts were Haemachromatosis and I also had Rosacea. However, after a year of inconclusive analysis I visited my GP practice to ask for a second…
In June 2011 the haematology consultant at a London hospital suspected a myeloproliferative disorder because my platelet count had shot up from its normal range to 937 and he asked for a JAK2 screening. This was carried out later that month. On reviewing the test results in July, the JAK2 test was negative but there…
My name is Annette and I am 62 year old. Fourteen years ago I was feeling ever so tired so my GP decided to have blood tests done for this and the results kept coming back with a rather high platelet count. ‘Don’t worry’ he said. But three tests later I was diagnosed with a…
Hi, I’m Chris, 58 years old reasonably fit as I like to run and kayak, and the am the fittest of my friends and family in my generation. In April 2010 I was on post Christmas diet and was feeling how slim I was when I noticed a lump below my rib cage that didn‘t…
October 2013 I was the fittest I had ever been, 10K’s under my belt along with a half marathon and the GreatSouth Run. I felt a little poorly the morning of my last run however I put it down to nerves. I started the race well, set out fast pushing myself harder than I had…
Hello my name is Gloria After a routine blood test in February 2010 I was diagnosed with essential thrombocythaemia. I was 68 Years old. My platelet count was 700 and I had a bone marrow aspiration to confirm the diagnosis. I was shocked to say the least as I thought of myself as very healthy.…
I was diagnosed aged 44 with essential thrombocythaemia (ET), 20 years ago. In those “dinosaur days” the internet information was just for the privileged few who had access to medical sites and there wasn’t very much even then. My GP had to go and look up the condition and told me that at that time…