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…
Melanie C aged 55. In March 2020 I had difficulty breathing and was admitted twice to hospital within four days. This was likely the result of a deep vein thrombosis, possibly not the first and resulting in a diagnosis of having had massive pulmonary embolisms for which I was put on blood thinners. Following this…
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…