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 tells us in this video why she wanted to be part of the Fundraising Team
Louise shares some tips that have helped her overcome some of the side effects of PV (polycythaemia vera)
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…
Chris shares his experience of a BMT also known as SCT (stem cell transplant).
Chris talks about being a buddy and giving support to others.
John took part in the 2015 Virgin London Marathon in aid of MPN Voice
Alisia talks about her experience of Interferon and injecting
Dick M, age 77 At the age of 69 I appeared to be very fit and active, cycling, hill and dog walking and managing a half-acre garden. However, one morning I woke up with severe vertigo, had difficulty standing and was vomiting at the least provocation. A visit to my GP suggested it was an…
My name is Jeffrey and I was diagnosed with Primary Polycythaemia several years ago. (I can’t actually remember how many) having been called back to my doctor following blood tests for another completely separate problem. I remember the consultation well, “ Jeffrey you have elevated red blood cells and I need to send you to…