Peer ‘buddy’ support
Maz talks about how a buddy really helped her when she was diagnosed with ET
NICE Final guidance: Myelofibrosis – ruxolitinib (review of TA289) [831]
We are happy to share with everyone a very positive outcome from the NICE review of ruxolitinib. Particular thanks to everyone who responded to information requests, our patient attendees, patient advocacy teams and clinical experts. What has NICE said? Ruxolitinib (Jakavi) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults…
Marilyn, the MPN Voice Fundraising Co-Ordinator
Marilyn tells us in this video why she wanted to be part of the Fundraising Team
Tips on ways to overcome some side effects of PV
Louise shares some tips that have helped her overcome some of the side effects of PV (polycythaemia vera)
Helen Bass
17 March 2016 “Hello, my name is Helen Bass and I live in Hertford with my partner. Having played tennis and football at county level for many years, I then turned to running and crossfit training as a means of keeping fit. I like a challenge so I entered the ballot for the London Marathon,…
Advocacy
Led by Jon Mathias, co-chairperson for MPN Voice and Caroline Thomas an ET patient, we have been looking at ways to best represent patients affected by myeloproliferative neoplasms (MPNs) Advocacy means speaking on behalf of someone or something and in this case, we’re saying that one of MPN Voice’s roles, as our name suggests, is…
Trevor Buckley
15 March 2016 “After my fiancé Lauren was diagnosed with Essential Thrombocythaemia in January 2014 at the age of 28, she went to MPN Voice for support and guidance. I was amazed and humbled by the support she received from you forums, especially after attending a patient group forum in London last year.She has struggled…
James White
15 March 2016 “Hello, my name is James and I live in Winchester with my beautiful wife Sarah, who is just about to have our first baby….. middle of April!!! So no pressure then!!! I’m either going to be running on Sunday 24th April really fast, because our baby is late and just in case……
Samuel Beevor
15 March 2016 The 2015 Virgin London Marathon weekend was poignant for me, I spent most of the weekend reading the information about ET on the MPN Voice website, I had suffered two mini-strokes in quick succession at the age of 30. I was diagnosed with Essential Thrombocythaemia. I was reading up on my impending…
Chris and BMT (bone marrow transplant)
Chris shares his experience of a BMT also known as SCT (stem cell transplant).