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…
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 on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control…
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 experiencing a DVT post knee surgery. It was very difficult for Mary to be told she had rare disease and was worried about her future…
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 age and experiencing symptoms, including migraines with aura and Reynaud’s disease. Dana talks about the importance of advocating for herself and researching treatment options, leading…
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 this had an impact on him as he was so young, particularly with regards to his career choice. Gabor tells Nona that he takes Aspirin…
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 to allow people living with MPNs to be able to capture their quality of life (QoL) data on a daily, weekly or monthly basis, to…
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 itchy skin, he searched the internet for some answers and made some changes to products he was using, but nothing helped. He then received an…