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…
In this video, Dr Abbie Wickham discusses the psychological impact of Covid-19 among the MPN community and how to resolve these stresses.
An update for MPN patients recorded on 22 May 20. Profs Claire Harrison & Adam Mead, Dr Donal McLornan & CNS Claire Woodley give an update on how COVID-19 is affecting MPN patients.