A series of informal conversations with members of the MPN community.
As we were unable to meet face-to-face with patients at forums during the Covid lockdowns, we started a series of vlogcasts, with Nona co-chair of MPN Voice and a MPN patient herself. She will be having conversations with MPN patients, to hear how they manage and live with their MPN, and with healthcare professionals who treat MPN patients, to hear how they diagnose and treat their MPN patients in their clinics.
The vlogcasts can be viewed on the MPN Voice YouTube channel. Please send any feedback and questions to info@mpnvoice.org.uk.
Pegylated Interferon Alpha – Supply & Commissioning Update We are very pleased to let you know that the recent shortage of Pegasys interferon has now been resolved, and hospitals are…
The vlogcast features Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, discussing the new study on thrombosis risk in MPN patients using QRISK3 Score. Dr Harrington explains the…
In this vlogcast, Neil shares his personal journey living with a MPN, beginning with his diagnosis of ET in 1994 and progressing to MF in 2023. He speaks candidly about…
In this vlogcast, Prof Claire Harrison, Guy’s & St Thomas’ Hospital, London, speaks with Nona about considerations for MPN patients when travelling away from their home city and how to…
In this vlogcast, Dr Kathleen McHugh shares her talk/presentation – Psychological adjustment after diagnosis of MPN; coping with uncertainty. The talk focuses on coping with a serious illness diagnosis, particularly…
The vlogcast features Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, discussing the development and progress of an My MPN Voice app designed to help patients monitor their…
In Conversation with The Steering Committee Members of the MPN Advocates Network. The MPN AN was founded in 2013 by representatives from several MPN patient support groups as a way…
In Conversation with Craig Sowerby, who talks to Nona about his PV, when it was diagnosed and the treatment he has been receiving to manage it and why he decided…
In conversation with Prof Claire Harrison, Guy’s & St Thomas’ NHS FT, who clarifies the situation regarding the temporary shortage of Interferon, which is due to the manufacturing rights of…
In Conversation with Tobe Aleksander, who talks to Nona about her PV, when it was diagnosed and the treatment she has been receiving to manage it and why she decided…
In Conversation with Mark Taylor, who talks to Nona about his PV and being a volunteer with MPN Voice, building up and maintaining the social media platforms. Mark begins by…
In Conversation with the My MPN Voice app team – Dr Patrick Harrington, Debbie Street and Mark Taylor. The team talk to Nona about the recently launched My MPN Voice…
In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted…
In Conversation with Mary Zazzi, who talks to Nona about being diagnosed with ET in 1983 when she was 17 years old, when her high platelet count was discovered after…
In Conversation With … Dana Turner, who talks to Nona about being diagnosed with PV when she was 29 years old, with a history of high platelets from an early…
In Conversation With … Gabor Posta, who talks to Nona about being diagnosed with ET when he was aged 17, and then with PV about 5 years later and how…
An extra vlocgast this month with Nona and Orlando talking about the MyMPNVoice App which has been developed in partnership with Sanius Health. The My MPN Voice App is designed…
In Conversation With … Paul Goode, who talks to Nona about his PV and how it was diagnosed in March 2020. Paul tells Nona that in 2019 he was experiencing…
In this interview Dr Patrick Harrington, Consultant Haematologist, Guy’s & St Thomas’ Hospital, talks to Nona about Covid vaccines for MPN patients, he starts off by describing the research he…
In Conversation With … Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin, who spoke to Nona about her role as haematologist in St Vincent’s, taking up the post 2…
In Conversation With … Sarah Connolly, Candidate ANP Haematology, University Hospital Galway. This conversation took place at the MPN Voice Patients’ Forum in Galway, held on Sat 24 June 2023. …
In Conversation With … Annette Matthews, who talks to Nona about her MPN journey, from ET to MF to having a stem cell transplant (SCT) in 2017 and life beyond. …
In Conversation With … Dr Arvind Pillai, Consultant Haematologist, The Countess of Chester Hospital, who talks to Nona about Interferon. Nona starts by asking Dr Pillai what it is and…
A very special interview with Nona Baker Co-Chair of MPN Voice and Professor Claire Harrison. In this interview Professor Claire Harrison shares breaking news with up-to-date results from the MAJIC…
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…
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…
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…
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…
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…
In Conversation With … Dr Eibhlin Conneally, Consultant Haematologist, St James’ Hospital, Dublin, who talks to Nona about her interest in MPNs, and how active research has been in the…
In Conversation With … Adam Spielman who talks to Nona about his PV, from diagnosis in 2008 to the present day. Adam tells Nona that his GP recommended blood tests…
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…
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…
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…
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…
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…
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…
In Conversation With … Debbie, who talks to Nona about her diagnosis of ET and shares some tips on how she manages and copes with her symptoms. Click here to…
In Conversation With … Jon Mathias, co-chair of MPN Voice, who talks to Nona about advocacy and what it means for the MPN community, representing and speaking on behalf of…
In Conversation with…. Alice, a 26 year old with ET who tells Nona about her journey of being diagnosed with ET, and shares some of the top tips she has…