Positively, scientific advances in hemophilia care have opened opportunities for patients to better manage the physical manifestations of their disease.5 Now, the community is focused on reducing the psychological burden, so that patients can achieve a ‘hemophilia-free mind’.6 Crucially, this requires collaboration between patients and their healthcare professionals, encompassing not just physical symptoms, but also the patient’s psychological wellbeing, goals and preferences.
Here, Martin tells his story of living with hemophilia B. Alongside him, Wolfgang Miesbach, professor of medicine at Frankfurt University Hospital, Germany, and member of the executive committee at the European Association for Haemophilia and Allied Disorders, offers insights into the treatment decisions he makes with his patients. This is Martin’s personal story — his experience may not be representative of all people living with hemophilia.
Navigating uncertainty: The rhythm of life with hemophilia
Martin was diagnosed when he was two years old, after he had a knock to the teeth and the bleeding wouldn’t stop. “I had to wear one of those foam hats through kindergarten,” he explains.
Like many people with hemophilia, his childhood was punctuated by ‘accidents’. As a teenager, his life was permeated by the forethought needed to manage his condition:
When I got older and into skateboarding, I realized that some of the injuries I got were quite severe. Every time I did something, I had to plan for the outcome … and that became daily life for me.
Martin Nielsen, Denmark, who lives with hemophilia B.
Now, as an adult, Martin better understands his internal conflict between the desire to exercise and the threat of bleeds. Despite a love of sports, strenuous activity has come with a price. “It was always two steps forward, one step back, because there was always that little thing that you didn’t recognize [e.g. a bruise] that would turn into a bleeding. Then I would have to rest.”