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…
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…
Brian 74 writes on 20th February 2014 I was due to have the first of two operations on my knees. Accordingly, I had a pre-op examination three weeks before. On the day after the pre-op I received a phone call from the hospital to say that the operation had been cancelled because I had a very…
Hi my name is Pamela. I am 55 years old and I live in Western Australia. I was diagnosed at the age of 47 after a high platelet level was found in a normal health check. My father was also diagnosed at the same time although he is thirty years my senior. At this time…
I was diagnosed with myelofibrosis (MF) in 2011. I was fortunate to have been diagnosed early because I competed in many difficult ultra distance mountain bike races. I consider the early diagnosis to be ‘fortunate’ because without it, I would have pushed myself very hard in a tough race and would probably have had a…