Uschi K-R aged 69 I was born in Germany but have been living in the UK for the last 45 years, where I raised my family and worked as a teacher of Modern Foreign Languages. In 2013, after a routine blood test with my GP, I was told that I had a slightly elevated haematocrit…
Steven S Aged 76 Managing my MPN against a plethora of medical issues I was diagnosed with ET about 30 years ago. This progressed to PV about eight years ago. I also have another kinase-based disorder – Neurofibromatosis type 1 that complicates things a bit. NF1 is a non-driver mutation for MPNs, increasing my risk…
Katy B, aged 43 Taking charge. When I was first diagnosed, I had been feeling run down for a long time. I felt constantly tired, and initially I was told I had viral arthritis and depression, but eventually was diagnosed with an iron deficiency, but with too many red blood cells. When I was diagnosed…
Jillian D aged 59 I was diagnosed at an appointment following a minor operation. The follow-up team told me they had written to my GP three times about their concerns for my blood test results. I was referred to a haematologist who diagnosed PV. To be honest, I was floored when I found out I…
Dorothy B, aged 75 “We can deal with this.” I was diagnosed with PV in early July 2020 and although I was a bit shocked at the news, I was assured by my specialist: “We can deal with this.” Prior to my diagnosis, during a weekend at the end of May, I had been feeling…
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…