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…
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.…
This was the first in-person forum MPN Voice has held since the end of 2019, it was very well attended by MPN patients, with their families and friends, from across Ireland, who were all extremely pleased to meet-up once again in-person, to talk to other people with MPNs and to hear the presentations given by…
In Conversation With … Kirsty Crozier, ANPR, based in The Great Western Hospital, Swindon. Kirsty talks to Nona about her role as the haematology advanced nurse practitioner within the haematology department and the support and services she provides to MPN patients. She also talks about how haematology ANPRs and CNSs (clinical nurse specialists) support patients…
Bone marrow biopsies. A hot topic at patient forums – online and in-person – and the three words that cause anxiety in many as soon as they’re spoken. Do we need a biopsy to confirm an MPN diagnosis? When should we have one? What do they tell us that blood counts don’t reveal? And how…
Antibody and antiviral treatments for people with blood cancer (updated 22 April 2022) People with blood cancer, which does include people with a MPN (who are taking medication for their MPN – aspirin alone does not count) can now access the latest covid treatments after a positive lateral flow test, rather than having to wait for…