Mark R – aged 50 Using the bucket of energy wisely. I was diagnosed with polycythaemia rubra vera in 1999, which progressed to myelofibrosis in 2019. This was confirmed by a bone marrow biopsy which showed I am JAK2 positive. When I was first diagnosed in 1999, I was devastated! My wife and I had…
Lisa H aged 55 In 1994 I visited my GP as I was very lethargic and experiencing strange transient flushing episodes even after drinking just a glass of wine. My platelet count was 1.5 million and after numerous tests, I was eventually diagnosed with ET aged 27. My haematologist prescribed aspirin plus Hydroxycarbamide and…
Kimberley R age 37 In 2010, at the age 26, following the birth of my son I suffered a major deep vein thrombosis (DVT) and multiple pulmonary embolisms – clots in my lungs. I had to stay in hospital for several weeks, during which time I suffered a further two DVTs in my right leg.…
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…
Kathie – aged 45 I enjoy a very fulfilling career. I am also a daughter, a partner, and the mother of three beautiful children, ages 12, 10 and seven. I have suffered from ET since at least 2000 and now have Post ET-Myelofibrosis which progressed in 2017. However I recall having ET symptoms as young…
Juliet B, 67 years old. My MPN was diagnosed in 2020 through the results of blood tests. My GP had seen that my platelet levels were very high, and combined with my fatigue, he decided he would request further investigation and referral to a haematologist. I was relieved when my MPN (ET) was diagnosed, and…
Joan S aged 79 In 2018 my GP informed me that I had persistent anaemia. She suspected that I had a slow internal bleed and referred me to a gastroenterologist. He suggested that I be referred to haematology where I was diagnosed with MPN (ET) and underwent a bone marrow biopsy. I was quite sanguine…
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…
Frances D, 85 years old. I was diagnosed with essential thrombocythaemia (ET) in March 2018, after moving to a new GP who spotted my high platelets, and referred me to haematology where ET was diagnosed and confirmed by a bone marrow biopsy. I felt well physically, and the diagnosis I received, along with the information…
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…