MPN Voice provides support to patients and their families across the world who have been diagnosed with rare blood cancers called Myeloproliferative Neoplasms. The chronic nature of these diseases mean that it is very important for those affected to maintain a healthy lifestyle and look after their general wellbeing. Nutrition plays a key role and…
In Conversation With … Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin, who talks to Nona about her interest in MPNs, and how active research has been in the last 10 – 20 years particularly with the discoveries in understanding mutations and her hope that in the next 10 years this can be translated…
The 6th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was…
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…