In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control…
Big News for the MPN Community! The moment you’ve been waiting for is finally here! The My MPN Voice App has officially landed! Watch the info-video to see what it looks like. For our UK friends who registered their interest, keep a close eye on your inbox. Our onboarding team will be reaching out to…
In Conversation with Mary Zazzi, who talks to Nona about being diagnosed with ET in 1983 when she was 17 years old, when her high platelet count was discovered after experiencing a DVT post knee surgery. It was very difficult for Mary to be told she had rare disease and was worried about her future…
The video of the MPN Voice patients’ virtual forum, held on Friday 8 March 2024, is now available to view. This online forum focussing on Post ASH (American Society of Hematology) Updates features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Jonathan Lambert, University College London Hospitals NHS FT; Dr Bethan…
We are delighted to announce that NICE (the National Institute for Health and Care Excellence) has recently released guidance recommending momelotinib as an option within the NHS for treating myelofibrosis-related splenomegaly (enlarged spleen) or symptoms in adults with intermediate-2 or high-risk myelofibrosis (MF) with moderate to severe anaemia, who have not had a JAK inhibitor…
In Conversation With … Dana Turner, who talks to Nona about being diagnosed with PV when she was 29 years old, with a history of high platelets from an early age and experiencing symptoms, including migraines with aura and Reynaud’s disease. Dana talks about the importance of advocating for herself and researching treatment options, leading…
The 7th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was…
In Conversation With … Gabor Posta, who talks to Nona about being diagnosed with ET when he was aged 17, and then with PV about 5 years later and how this had an impact on him as he was so young, particularly with regards to his career choice. Gabor tells Nona that he takes Aspirin…
An extra vlocgast this month with Nona and Orlando talking about the MyMPNVoice App which has been developed in partnership with Sanius Health. The My MPN Voice App is designed to allow people living with MPNs to be able to capture their quality of life (QoL) data on a daily, weekly or monthly basis, to…
In Conversation With … Paul Goode, who talks to Nona about his PV and how it was diagnosed in March 2020. Paul tells Nona that in 2019 he was experiencing itchy skin, he searched the internet for some answers and made some changes to products he was using, but nothing helped. He then received an…