Reflections from the European Haemophilia Consortium (EHC) in Istanbul

I am really thankful to Haemophilia Northern Ireland (HNI) for supporting my attendance at the EHC in Istanbul. It was an invaluable experience and a privilege to represent them at such an important event.

It was encouraging to hear about how far the management of Haemophilia, Von Willebrand and other bleeding disorders has come. There were discussions about the research and clinical trials being carried out and it was promising to hear of the potential new treatments for the ultra-rare conditions such as Glanzmanns Thrombocytopenia and Factor VII deficiency that currently have minimal treatment options, yet are such serious conditions significantly affecting the lives of patients and their carers. Shared decision making was a strong theme of the conference, with lots of discussion about how patients and their health care teams can share knowledge to make these choices together about the best management of patients, considering aspects such as annual bleed rates, problematic joints and lifestyle factors.

Personally, the most significant part was talking with people on different treatments and hearing why they might have chosen them or why they might have changed. Daniel is four and on a relatively new prophylactic treatment, that is working incredibly well for him. However, at his age he cannot yet tell us how it feels for him. Speaking with people on the same treatment was invaluable, as it gave me lived experiences and reassurance of the benefits of Daniel’s treatment.

I was also struck by how positive people were despite past and ongoing health challenges. These challenges commonly stemmed from limited prophylaxis and treatment for their bleeding conditions and/ or other complications. Issues included ongoing pain, reduced function and mobility, problematic joints and surgery. Even so, they are living lives that are not held back by their bleeding disorder. I feel inspired by how everyone is pushing for better research, treatments and better patient-centred care, forging the way for a better future for individuals and families with a bleeding condition.

By Mary-Anne Jess