Fundraising Team Christmas message 2022

The MPN Voice Fundraising Team would like to say a huge THANK YOU to everyone who took part in fundraising events and made donations in 2022, and to all your amazing supporters for their generosity. We were delighted that 2022 saw the return to some amazing fundraising events, as we, with caution, started to return…

VivL

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

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

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

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

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…