Have you ever asked yourself ‘why do I have an MPN?’. I know I have. It’s a question that I am sure appears frequently at point of diagnosis and occasionally resurfaces over the course of living with an MPN. The chronic nature of the disease means that patients like us have a long time to…
As of 21 February 2022 the JCVI recommends that people aged 12 and above who have blood cancer – MPN – should have five vaccine doses (three primary doses and two boosters). Blood cancer and immunosuppression Most people who are living with blood cancer have a weakened immune system, which makes it harder to fight…
In Conversation with…. Alice, a 26 year old with ET who tells Nona about her journey of being diagnosed with ET, and shares some of the top tips she has learnt along the way. Click here to view the vlogcast. Alice writes a monthly blog for MPN Voice dedicated to young people and MPNs, you…
In the summer of 2020, I started to experience new and debilitating symptoms. My head has always been where my MPN has manifest itself through years of migraine with aura, which stopped when I was diagnosed with ET and started taking Clopidogrel. But three unexpected migraine attacks in quick succession in the pandemic set off…
Have you had COVID 19 infection? We need to find out more about how long covid affects people like you – can you help us? We would like to share with you an opportunity to take part in a study to investigate the impact of COVID-19 infection in people with myeloid blood cancers. What is…
Room 5 is the name of Helena Merriman’s new radio series and podcast for the BBC which features eight stories of life-changing diagnoses. Its title is a nod to the significance of the room in which everything changes. The space where you walk in one person but come out of the door another. When I…
If you’re a young patient, I am sure this will be very familiar to you. Googling ‘what is an MPN?’. This might initially be in the build up to, or the aftermath of, your first haematology appointment. We’re often warned ‘don’t Google your symptoms’, but sometimes the pull of the web is just too strong…
This month I am joined by Gabor who is 30, has PV, and is my unofficial patient buddy. Gabor and I met at my first MPN Voice patient forum at the top of Guy’s hospital in 2016. Anyone who has attended a forum there will know that you get remarkable, panoramic views over the city…
Hello. My name’s Alice. I’m 26 and I have Essential Thrombocythaemia. Over the next year, I’ll be publishing monthly blog posts here on the MPN Voice website about what it’s like to be a young person with an MPN. I’ll be writing about my personal experience and journey of being diagnosed with an MPN, together…
As you will be aware the government has launched a 3rd dose of COVID vaccination for selected patients who may not have mounted an adequate response to the first two doses. Separately adults over 50 years and those in original vaccine groups 1-9 are to be offered a so-called booster dose. The type of vaccine…