Suzie W, 46 years old. I was diagnosed with ET in 2012 while serving in the RAF. Although my platelets remain at around 1200, I am lucky to be classed as low risk, and I only really suffer with fatigue and itchy ‘burny’ skin. I managed to stay healthy and keep myself from being medically…
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…
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.…
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…
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…
Charlie C 26 years old I have Essential Thrombocythaemia (ET), which was officially diagnosed in December 2020, one month after I presented with symptoms. Being a doctor myself has made this a very strange and surreal experience; having medical knowledge has been mostly helpful, but it has also made things difficult at times. In November…
Brenda F – aged 68 My MPN was discovered through a bone marrow check, as my white cells had been increasing. I was shocked when I was first diagnosed, but I am fortunate to have the help of a great team at Guy’s hospital. In terms of the challenges of living with an MPN, I…
Alisia O – aged 60 I’m a wife and mother of two beautiful girls. I was diagnosed in 2008 with essential thrombocythaemia. Emotions of diagnosis Apart from a number of recurrent miscarriages, up until that point I had generally been fit and healthy and it was only through trying to donate blood that my high…