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Just imagine… You’re a first-time mother. Your pregnancy is uneventful and the birth is fine. When your son has a heel prick test, he bleeds for a lot longer than would normally be expected. This starts a chain of events that leads to him being diagnosed with severe haemophilia. You’re shocked. You don’t know what …
“It’s a way of life” – Perceptions of Pain in Haemophilia study results
Pain is, sadly, something most people with haemophilia have a close familiarity with. Pain is a highly personal experience. It’s something that can have huge impacts on wellbeing, mental health, and social life. However, as Kate Khair and her colleagues note in their article ‘“It’s a way of life”: Results from the Perceptions of Pain …
Personalising haemophilia management with shared decision making
Haemophilia healthcare is constantly evolving. Partnership with people with haemophilia is increasingly recognised as vital for ensuring high quality and ethical healthcare. This means recognising that people with haemophilia have ‘experiential knowledge’ – that is, knowledge gained from personally living with haemophilia and the day-to-day experience of managing their haemophilia. To make use of …
V is not for von Willebrand disease!
I’m always very happy to go to Africa – and not so long ago I was lucky enough to go to The Gambia (the smiling coast) in West Africa with the Novo Nordisk Hemophilia Foundation (NNHF). We were there to do education and training for health care professionals; trying to identify people with bleeding disorders …
“I didn’t know I was a carrier”
Haemnet’s Cinderella Study explores the real life experience of women with bleeding disorders in the UK. Our third animation, Struggles and Support, tells the story of a mother who discovers she has the haemophilia gene when her son is diagnosed with haemophilia as a baby. This story is based on real life testimony shared with …
What do you do about your patients’ pain?
There was a time when no-one really talked about pain and bleeding disorders. Now, no bleeding disorders conference is complete without sessions on pain. But how well do we understand it? If you attended the recent WFH meeting, you might have seen the results of our own pain survey, conducted in the UK. We sent …
It’s not all about boys
Haemophilia is not the most common inherited bleeding disorder, but it is the one that most people have heard of. It is sometimes referred to as “the royal disease”. Queen Victoria is much cited as the root of the genetic trait that resulted in various European royal families being affected by haemophilia in the 19th …
It’s time to talk about pain
We know that pain is common among people with haemophilia. The impacts of living with chronic pain are known too – functional limitations affecting the activities of everyday life, negative mood and susceptibility to poor mental wellbeing, reduced quality of life. But even in these times of unprecedented access to effective treatment, many people with …