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…
The MOMENTUM study is a global, randomized, double-blind clinical trial evaluating momelotinib (MMB) in myelofibrosis patients who are symptomatic and anaemic and previously treated with an approved JAK inhibitor. The trial met all of its primary and secondary endpoints, achieving statistically significant benefit on symptoms, anaemia and splenic size. Professor Claire Harrison, Guy’s & St…
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…
We have some important and very welcome news to share with you about a new drug for myelofibrosis patients. After a long and complicated appraisal process, the National Institute for Clinical Excellence (NICE) has decided that fedratinib is to be made available to the NHS. The drug, to be distributed under the name Inrebic, is…
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…
MPN Voice is committed to providing health care information and support through a variety of channels. Please can you take some time to help us to understand your communication preferences for receiving information about MPNs. All answers will be anonymous and we will use the results to develop the support needed to MPN patients and…
We need your help – will you share your story on our website? We are currently updating and reviewing the information on our website. The real stories shared by the MPN Community are an important section where new patients and their families can be informed and encouraged by stories of how different people are living…