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,…
MPN Voice provides support to patients and their families across the world who have been diagnosed with rare blood cancers called Myeloproliferative Neoplasms. The chronic nature of these diseases mean that it is very important for those affected to maintain a healthy lifestyle and look after their general wellbeing. Nutrition plays a key role and…
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 last 10 – 20 years particularly with the discoveries in understanding mutations and her hope that in the next 10 years this can be translated…
The 6th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was…
This online webinar is focussing on stem cell transplants (SCTs), with presentations from Dr Donal McLornan and Dr Andrew Innes, and Andrew Jedras, a patient speaker. Programme Welcome and introduction – Nona Baker, Co-Chair MPN Voice An introduction to allogeneic SCT for MF Part 1 – Dr Donal McLornan, Consultant Haematologist, UCLH Stem cell transplants…
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 because of nerve damage in his leg, and that due to the results he was referred to a haematologist who diagnosed PV. The diagnosis was…