This online webinar is focussing on stem cell transplants (SCTs), with presentations from Dr Donal McLornan and Dr Andrew Innes, and Andrew Jedras, a patient speaker. Programme Welcome and introduction – Nona Baker, Co-Chair MPN Voice An introduction to allogeneic SCT for MF Part 1 – Dr Donal McLornan, Consultant Haematologist, UCLH Stem cell transplants…
In Conversation With … Adam Spielman who talks to Nona about his PV, from diagnosis in 2008 to the present day. Adam tells Nona that his GP recommended blood tests because of nerve damage in his leg, and that due to the results he was referred to a haematologist who diagnosed PV. The diagnosis was…
VivL aged 69 Despite months of severe headaches which I went to my GP about, nothing was done until I had a transient ischaemic attack accompanied with numbness and tingling in my right arm and face. I was 39, very fit, played squash 2 or 3 times a week, swam every morning and walked the…
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…
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…
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.…