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 the emotional and physical toll of his MPN, his experiences with treatment, and the ongoing decision-making process around a potential stem cell transplant. Their candid…
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 be prepared and cope with change if events cause disruption to travel. Overall, the discussion emphasizes resilience, practical planning and mental well-being to help MPN…
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 for newly diagnosed patients and their families. Dr McHugh uses analogies and practical advice to help patients understand and manage their emotional responses to…
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 myeloproliferative neoplasm (MPN). The app, launched in April 2024, has over 300 users who track their symptoms and biometric data using a Withings smartwatch.…
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 of creating and maintaining collaboration between these organizations and providing a platform for joint activity. MPN AN is a leading international organization that operates for…
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 to fundraise for MPN Voice, to raise awareness about MPNs and funds to support us. Craig recently completed a cycle ride from John O’Groats to…
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 Interferon transferring from Hoffmann-La Roche to Pharma& and the commissioning of a new manufacturing plant. Prof Harrison stresses that the current shortage is temporary and…
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 to take part in the Mithridate Study. This is part 1 of a series of 3 conversations that Tobe and Nona will have about Tobe’s…
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 telling Nona that as a military air traffic controller he is subject to annual medicals, and following blood tests, he was diagnosed with JAKII positive…
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 app: the objectives and goals of the app and associated research study that patients will be taking part in, via the app and the wearable…