Dick M, age 77 At the age of 69 I appeared to be very fit and active, cycling, hill and dog walking and managing a half-acre garden. However, one morning I woke up with severe vertigo, had difficulty standing and was vomiting at the least provocation. A visit to my GP suggested it was an…
I was diagnosed with ET in August 2000, aged 30. My only symptom at that time was priapism; (wikipedia.org/wiki/Priapism) originally lasting an hour or so and occurring three months apart but gradually developing into 2 or 3 times a week lasting up to 7 hours ! At that time I was being treated by a…
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…
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…
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…
I was diagnosed with polycythaemia ruba vera and essential thrombocythaemia five years ago. This was due to a blood test for something totally different and a complete fluke. A number of friends said I had looked very red and not well and I also had some health issues which I didn’t associate with the condition.…
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 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…
I would like to share my story. About 8 years ago, while on holiday in Spain, I started to have daily headaches which I blamed on the stress of being driven to and around, too many busy cities in a fortnight. I also began to experience a flash of bright light when opening my eyes…