Charlie C 26 years old I have Essential Thrombocythaemia (ET), which was officially diagnosed in December 2020, one month after I presented with symptoms. Being a doctor myself has made this a very strange and surreal experience; having medical knowledge has been mostly helpful, but it has also made things difficult at times. In November…
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…
Brenda F – aged 68 My MPN was discovered through a bone marrow check, as my white cells had been increasing. I was shocked when I was first diagnosed, but I am fortunate to have the help of a great team at Guy’s hospital. In terms of the challenges of living with an MPN, I…
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…
This online forum focussing on ET – featured talks from: Dr Anna Godfrey, Cambridge University Hospitals; Prof Mary Frances McMullin, Queen’s University Belfast, Dr Joanne Ewing, University Hospitals Birmingham, Prof Claire Harrison, Guy’s & St Thomas’ Hospital and Faye McGillian, patient speaker. Programme Welcome from Nona Baker, co-chair MPN Voice, and Prof Claire Harrison, GSTT…
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…
This online forum – Symptom Management – featured talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin, Specialist Occupational Therapist, GSTT, and Rachael George, Physiotherapist, GSTT. Programme Welcome from Nona Baker, co-chair MPN Voice, and Prof Claire Harrison, GSTT Symptom overview and tracking – ANP Claire Woodley Focus…