In Conversation With … Alisia O’Sullivan, ET patient and MPN Voice volunteer, who talks to Nona about her ET and being involved with MPN Voice. Alisia was diagnosed with ET 15 years ago, she tells Nona how her diagnosis came about, she was going to give blood and almost missed going and was very glad…
In Conversation With … Prof Lesley Anderson, Chair in Health Data Science, Aberdeen Centre for Health Data Science and Chief Investigator for the MOSAICC Epidemiology Study, who talks to Nona about how the study started and how she became involved. Lesley tells Nona that the study started as part of her study portfolio when working…
This online forum focussed on updates and latest research in MPNs from the ASH (American Society of Hematology) annual meeting held in Dec 2022. The talks were presented by: Professor Claire Harrison, Guy’s & St Thomas’ Hospital, London and Professor Adam Mead, University of Oxford. About ASH – with more than 18,000 members from nearly…
MPN Voice has launched a young patient network and on Sunday 2nd April we held our first virtual meeting! It was a fantastic event, and we were thrilled to see so many young patients attending from the UK and around the world. The main part of the meeting was a breakout session, facilitating discussion between…
In Conversation With … CNS Avril Gleeson, Haematology Clinical Nurse Specialist, Mercy University Hospital, Cork, Ireland, who talks to Nona about the telephone clinic for reviewing MPN patients, which was set-up before the COVID pandemic, and the benefits for the patients, particularly patients who have challenges travelling to the hospital, or patients who are working…
If you follow MPN Voice on social media, you’ll have seen that the charity has recently announced the first of a series of patients’ forums taking place this year. In addition to the big ‘Living with MPNs Day’ held annually in London, MPN Voice runs a number of regional forums in different parts of the…
In Conversation With … Dr Nauman Butt, Consultant Haematologist, The Clatterbridge Cancer Centre, Liverpool, who talks to Nona about side effects of MPNs and medications, particularly skin complications of itch (pruritus) and skin cancers. Dr Butt talks about the increased risk factors for skin cancers (non-melanomas) for MPN patients from sun exposure and some treatments,…
The video of the MPN Voice patients’ ‘virtual’ forum, held on Thu 12 Jan 23, is now available to view. This online forum focused on Menopause, HRT and MPNs, with guest speaker Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust. Also on the panel were Prof Claire Harrison and ANP Claire…
In Conversation With … Maz Campbell-Drew, ET patient and MPN Voice administrator, who talks to Nona about her ET diagnosis in 2003 to the present time, and being the MPN Voice administrator. Maz says she found MPN Voice, or MPD Support as it was then called, in 2008, as she was starting Hydroxycarbamide and wanted…
Living with an MPN means regular appointments with a haematology team for tests and check-ups. It can be daunting facing your first consultation. But even for patients who are frequent flyers, well-seasoned in what to expect, they can be stressful situations for you and your family. Whilst a doctor’s schedule is filled with back-to-back consultations,…