In Conversation With … Debbie, who talks to Nona about her diagnosis of ET and shares some tips on how she manages and copes with her symptoms. Click here to view the vlogcast. We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk. We would like to thank Debbie for…
I am sat with my mum in the Cancer Centre at Guy’s Hospital in London. It is a light and airy building with tall windows and colourful seating areas. Dotted around the walls are large screens which flash every couple of minutes with patients’ names and allocated room numbers. We have just stepped out of…
In Conversation With … Jon Mathias, co-chair of MPN Voice, who talks to Nona about advocacy and what it means for the MPN community, representing and speaking on behalf of the MPN community with submissions to NICE, the SMC and the NCPE regarding decisions on value for money for medications. And how MPN Voice collaborates…
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…