Beyond bleeds: the power of partnership in hemophilia

“I would like to be able to escape. I dream of an elderly life where I wouldn’t need crutches, and the disappearance of thoughts about having to. I would really, really like to not worry about that,” says Martin Nielsen, who lives in Denmark and has hemophilia B. 

Thursday Apr. 17, 2025, is World Hemophilia Day, established to recognize and raise awareness about hemophilia and other bleeding disorders. There are two types of hemophilia — A and B — which are both rare diseases caused by mutations in the genes that control blood clotting. Hemophilia affects around 350,000 women and 1.1 million men worldwide.1,2 

Living with hemophilia means navigating life under the threat of spontaneous bleeds — in joints, muscles or, in rare circumstances, the brain — from day-to-day activities or pursuit of a full life.3 As such, people with hemophilia can be confronted with regular thoughts like, ‘what is my risk today?’, along with fears, frustrations and the burden of painful and invasive treatments that can have a mental and emotional toll.3,4  

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.

Martin Nielsen (left) and Professor Wolfgang Miesbach (right) | via CSL Behring

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.” 

Trying to build a life on shifting sands 

“Studies clearly indicate that seclusion, isolation and depression are more common in people with hemophilia than in those without,” explains Professor Miesbach. 

Naturally, the disease is associated with a strong sense of insecurity and sometimes even a feeling of withdrawal. Although improvements have been made in recent years, the quality of life of people with the disease is still declining compared to the [general] population.

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.

On his mental health, Martin says: “I think I’ve become a little bit more apathetic … there is a realization that you have a building frame but there isn’t anything to build on. Every time I was trying to build a foundation for that frame, it just crumbled whenever I had an accident or spontaneous bleeding.” 

Your voice, your choice: Shared decision-making in hemophilia care 

“The term ‘hemophilia-free mind’ was coined in publications, and it means freedom not only from hemophilia itself, but also from the treatment of hemophilia and everything associated with it,” says Professor Miesbach.  

For him, consideration of quality of life, mental health and the patient’s holistic needs is essential:

We hardly have a conversation with our patients without mentioning the improvement in hemophilia therapy and what it means for quality of life, mental health and this feeling of freedom.

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.

Martin spoke to his doctor about treatment options and advises others to do the same. He explains that with his hemophilia treatment now, he feels like “I have got my own character back, my own identity back.”  

“There is a great need for advancements in hemophilia therapy and a significant demand from patients,” emphasizes Professor Miesbach. “Collaboration with politicians, the pharmaceutical industry, scientific societies, practitioners and patients is essential.” 

Recognizing this need, some European countries have already taken the bold step of introducing innovation through individual agreements that benefit both patients and payers. It is incumbent upon all of us, including national authorities, politicians and payers, to make innovative therapies accessible so that patients and clinicians have the full range of treatment choices to meet the diversity of clinical, psychological and personal needs through shared decision-making. The time for action is now to ensure every patient has access to the treatments they need. 

1. Skinner MW. WFH: Closing the global gap – achieving optimal care. Haemophilia. 2012; 18: 1-12.
2. Iorio A, et al. Data and Demographics Committee of the World Federation of Hemophilia. Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019; 171(8): 540-546.
3. Palareti, L., at al. Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study. Int J Qual Stud Health Well-being. 2015; 10: 28915.
4. Krumb E and Hermans C. Living with a “hemophilia-free mind” – The new ambition of hemophilia care? Res Pract Thromb Haemost. 2021; 5(5): e12567.
5. Mannucci PM. Hemophilia treatment innovation: 50 years of progress and more to come. J Thromb Haemost. 2023; 21 (3): 403-412.
6. Hermans C and Pierce GF. Towards achieving a haemophilia-free mind. Haemophilia. 2023; 29(4): 951-953.