My name is Jeffrey and I was diagnosed with Primary Polycythaemia several years ago. (I can’t actually remember how many) having been called back to my doctor following blood tests for another completely separate problem. I remember the consultation well, “ Jeffrey you have elevated red blood cells and I need to send you to…
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…
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.…
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,…
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…
My name is Helen and I was originally diagnosed with ET in October 1991 when I was 39 years old. It had been a fairly hot summer and I was suffering from increasing pain and discomfort in my feet. The only way of relieving the pain was using what my children referred to as Mum’s…
I am now 65 and was diagnosed with PV in 2005 when I was 57. I had a Well Woman blood test which showed my red blood count was close to 55 yet the previous year the counts had been normal. I was referred to the Radcliffe Hospital and during the consultation I had my…
Sally writes I had no serious illness before PV. I was asthmatic but well controlled with Milflonil and it never stopped my very active life, breeding, competing at top level with horses and ponies , and being a busy professional artist and sculptor. Diagnosis in 2010 was a life changing shock. That same year I…
Having previously lived in Spain, I am now resident in a beautiful part of France, with views of the Pyrenees in the Ariege. We had just signed for the house, and returned to Spain, when I started to get incredible itching after a shower. I knew our local doctor would say: ‘Well, it could be…