Bone marrow biopsies. A hot topic at patient forums – online and in-person – and the three words that cause anxiety in many as soon as they’re spoken. Do we need a biopsy to confirm an MPN diagnosis? When should we have one? What do they tell us that blood counts don’t reveal? And how…
I am sat with my mum in the Cancer Centre at Guy’s Hospital in London. It is a light and airy building with tall windows and colourful seating areas. Dotted around the walls are large screens which flash every couple of minutes with patients’ names and allocated room numbers. We have just stepped out of…
Have you ever asked yourself ‘why do I have an MPN?’. I know I have. It’s a question that I am sure appears frequently at point of diagnosis and occasionally resurfaces over the course of living with an MPN. The chronic nature of the disease means that patients like us have a long time to…
In the summer of 2020, I started to experience new and debilitating symptoms. My head has always been where my MPN has manifest itself through years of migraine with aura, which stopped when I was diagnosed with ET and started taking Clopidogrel. But three unexpected migraine attacks in quick succession in the pandemic set off…
Room 5 is the name of Helena Merriman’s new radio series and podcast for the BBC which features eight stories of life-changing diagnoses. Its title is a nod to the significance of the room in which everything changes. The space where you walk in one person but come out of the door another. When I…
If you’re a young patient, I am sure this will be very familiar to you. Googling ‘what is an MPN?’. This might initially be in the build up to, or the aftermath of, your first haematology appointment. We’re often warned ‘don’t Google your symptoms’, but sometimes the pull of the web is just too strong…
This month I am joined by Gabor who is 30, has PV, and is my unofficial patient buddy. Gabor and I met at my first MPN Voice patient forum at the top of Guy’s hospital in 2016. Anyone who has attended a forum there will know that you get remarkable, panoramic views over the city…
Hello. My name’s Alice. I’m 26 and I have Essential Thrombocythaemia. Over the next year, I’ll be publishing monthly blog posts here on the MPN Voice website about what it’s like to be a young person with an MPN. I’ll be writing about my personal experience and journey of being diagnosed with an MPN, together…