Basil is the name of my aunty’s labradoodle who came to stay with us last month while she was on holiday. I’ve always wanted a dog, so having Basil visit was really exciting and safe to say, I loved it. It was the first time Basil had stayed at our house, and I planned a…
In Conversation With … Chris McEvilly who talks to Nona about her PV, which was diagnosed 3 years ago after moving from South Africa and settling in Cork. She tells Nona that the diagnosis was a shock to her and her husband and that learning more about PV has helped them both, she also tells…
In Conversation With … Prof Mary Frances McMullin, Consultant Haematologist, Queen’s University Belfast, who talks to Nona about how she was appointed as a consultant haematologist in 1991 and her interests in MPNs and building up her clinic, and her involvement MPN Voice for many years, as a member of the medical advisory committee. They…
September is blood cancer awareness month. To mark this important date, I wanted to shine a spotlight on the young people within the MPN community who each have their own story and journey to share. This month, I am therefore passing the blog baton to 12 young people from across the world who have very…
Managing an MPN at school, college or university Although we’re currently in the midst of the summer holiday, the arrival of August inevitably leads to thoughts of the new term starting in September. It won’t be long before we’re swapping flip-flops for school shoes, exchanging TV remotes for pencil cases, and replacing leisurely lie ins…
In Conversation With … Louise Broughton, who talks to Nona about how her PV was diagnosed in 2009 after she had been experiencing symptoms for a number of years, and how she now manages these symptoms, and her top tip for dealing with the ‘itching’ – aquagenic pruritus. They then talk about the buddy support…
In Conversation With … Dr Clodagh Keohane, Consultant Haematologist, The Mercy Hospital, Cork, who tells Nona about her special interest in MPNs and haematology, and training at Guy’s Hospital in London. They also talk about her very busy clinic in The Mercy Hospital and the exciting news that the hospital will very soon be one…
Fatigue is a common symptom of MPNs and can be a significant challenge for patients. In a leaflet entitled ‘Fighting Fatigue’, MPN Voice lists the many ways in which fatigue can be experienced, from a lack of energy and inability to do ‘everyday’ tasks through to difficulties in concentrating, thinking, and making decisions. Disruption to…
In Conversation With …Michele, who talks to Nona about her MPN journey, from her initial diagnosis of PV 34 years ago, which then transformed to MF. Michele talks about her positive attitude towards her MF, and how Ruxolitinib greatly improved her symptom burden. She also shares some of her top tips, particularly having a buddy,…
For some people, MPNs have a minimal impact on their everyday lives. For others, MPNs can cause daily and debilitating symptoms that are difficult to manage and cope with. For the latter, living with a chronic disease throws up numerous challenges and obstacles that can make life, work, and social activities more of a struggle.…