My name is Jamie White and I ran the London marathon to fundraise for MPN Voice. Why did you decide to fundraise for MPN Voice? After my diagnosis I found MPN Voice to be such an incredibly helpful resource of information. They fund studies and work with healthcare providers and researchers to improve the lives…
My name is Andrew Livingstone, I was diagnosed with ET after a rollercoaster journey of mostly negative emotions, uncertainty and a lot of tests before finally getting a diagnosis in early 2023 that I had ET. I then spent most of last year working with doctors to get my medication levels right. I consider…
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…
Inrebic® has been developed to support patients with myelofibrosis and is a type of medicine known as a protein kinase inhibitor. This drug is used to treat adults with myelofibrosis, (a rare form of blood cancer) who have an enlarged spleen and/or other symptoms related to myelofibrosis. By blocking the action of certain enzymes (called…
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…