Breaking up is hard to do – a new start for Haemnet
It is just over 10 years since Kate Khair and I first formed Haemnet and began supporting the Haemophilia Nurses Association (HNA), principally by running its conferences and educational programmes. Since then, we’ve conducted numerous research studies and community-based programmes, redeveloped the HNA nurse competency framework, established a nurse training course and a leadership development …
The need to change perception
Why we need a European conference on women and girls with bleeding disorders Let me invite you to put yourself in the shoes of a young woman, 20 years of age. You recently moved away from home to begin your dream study to become a teacher. Once again, you find yourself visiting your …
POCUS focus
Bleeding into the joints is a common ‘complication’ of having haemophilia. As any of us who have experienced this can attest to, it’s really not fun. Worse, it can cause long term damage to the joint. It can sometimes be tricky to assess if joint pain is due to an active joint bleed or caused …
Tuning in on gene therapy
I began working as a bleeding disorders research nurse in 2012. Since then, I have been involved in many studies, most recently haemophilia gene therapy studies. When the treatment centre I was working at was asked to take part in a gene therapy study, I remember thinking this would be a golden ticket for …
Only a carrier?
The gene variant that causes haemophilia can be found in both men and women. Traditionally, women who have this genetic variation have been labelled as a ‘carrier’, with their connection to haemophilia understood solely as the risk of their sons developing the condition. There has been little interest in understanding the personal impact living with …
Choices and voices
The opinions and experiences of people with haemophilia increasingly shape the availability and choice of different treatment options. Scientists and pharmaceutical companies who develop new drugs for haemophilia care want to understand people’s preferences. This happens both early on in development and once a new treatment has been released. Researchers want to understand what features …
Family focus
Bleeding disorders are usually inherited, so understanding how a bleeding disorder fits into family history is important. But even when this knowledge is shared, it can be difficult to ensure that everyone affected is able to access the care they need. Haemnet’s Project Phoenix found that this was a concern for many people affected by …
The patient gene therapy journey
Gene therapies for both haemophilia A and B are currently in development. Although this is ongoing, the first gene therapy for haemophilia A has been given conditional market authorisation in Europe – which means it could be more widely available as a treatment option soon. Gene therapies for haemophilia aim to replace the faulty, disease-causing …
Freedom and control: Emi & Me
Prophylactic factor replacement remains the gold standard treatment for people with haemophilia (PwH). Since its introduction, prophylaxis has led to a significantly improved quality of life for PwH. However, some can develop inhibitors to the factor, making it ineffective. As a result, many PwH with inhibitors have had no choice but to treat bleeds on …
Living longer – The challenge of ageing with haemophilia
Thanks to advances in treatment and the mainstreaming of regular prophylaxis, people with haemophilia are living longer than ever before (at least, those with access to these treatments). There’s now an expectation that people with haemophilia will experience less joint damage and enjoy a good quality of life, particularly compared to previous generations who relied …