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…
Jennie Barnes aged 25 has lived with essential thrombocythaemia (ET) since she was diagnosed at the age of 13. In November 2013 at a routine consultation she was told that this had transformed into leukaemia. In the weeks that followed Jennie wrote an honest and moving blog about the ups and downs accompanying that diagnosis…
ET was discovered when I went for a routine blood test and a cholesterol check. The results showed that I had high blood platelets. I didn’t really know what blood platelets were and found out more information at a follow up appointment with my doctor who had referred me to see a haematologist. At that…
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…
Diagnosed in 2009 at the age of 35, Louise, now 40 shares: I will never forget the day that finally a GP had said the word “polycythaemia” and I asked him to write down, went back to work and googled it. For years I had been battling with migraines amongst other symptoms yet no one,…
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.…
Steve was diagnosed at 42 and shares: I’m now 46 years old and was diagnosed with polycythaemia rubra vera (prv) just over 4 years ago. People used to say to me you have a nice tanned complexion. 4 years on I now know it wasn’t a tan but it was my red blood count which…
Uncertain about the future Will, a 62 year old self-employed architect lives in Somerset. I was diagnosed with PV in 2010 when a swelling came up on my arm which was recognised by my GP as a haematoma or internal bleeding. A blood test showed that my haematocrit level was 50% higher than it should…
I am 40 with two small children. I was diagnosed in autumn 2013 after a portal vein thrombosis, which in itself was scary. After referral to a haematologist and a bone marrow biopsy, I was told that I had essential thrombocythaemia and was JAK 2 positive. At the time, it was TRULY AWFUL!. Your mortality…
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…