08/04/2026

Living with haemophilia should not have to mean living with limits^1,2  – hear from 4 inspirational members of the haemophilia community on how they embrace the everyday and extraordinary moments.

Haemophilia is a family of rare genetic blood disorders caused by a clotting factor deficiency, which prevents normal blood clotting.¹ People with haemophilia therefore have increased risk of bleeding, especially into the joints, which can lead to permanent joint damage over time.² Living with and managing haemophilia often means carefully considering and planning for the everyday and extraordinary moments,³ but it should not have to mean living with limitations.^1,2

We partnered with Matty, Luke, Ed and Alex to share candid reflections on their lives with haemophilia. From learning of their diagnosis at a very young age, overcoming treatment challenges to prepare for big milestones like moving away from home, competing in high-level sports and travelling the world.

Their journeys are as diverse as they are inspiring: Alex built a career as a world class cyclist, Luke is a Wildlife Biologist working in some of the world’s most remote jungles, Matty competes in a world-class cheerleading squad, and Ed is a team GB Paralympic rower.

They have all had to navigate the challenge of pursuing their ambitions while managing their haemophilia. For Alex, completing the Tour de France, widely regarded as one of the most gruelling sporting events in the world, as the first and only person with haemophilia to date stands as one of his proudest achievements. For Ed, internal joint bleeds in his ankle before starting treatment in childhood led to periods of time in a wheelchair or on crutches. Now, not only is he enjoying life at university, but he’s a Paralympic rowing champion, having won gold at the Paris 2024 Paralympics.

With appropriate guidance from their healthcare team, people living with haemophilia can often lead active, social and independent lives.^1,2 Healthcare professionals can provide recommendations for having a more active lifestyle and offer strategies to manage potential risks while supporting a well-rounded and fulfilling lifestyle effectively.¹

Matty, Ed, Alex and Luke are incredible examples of how you can still pursue your passions whilst living with haemophilia. Luke has mastered the art of navigating airport security protocols to travel safely with his medication, allowing him to travel the world photographing wildlife and interacting closely with some of the world’s most extraordinary animals! For Matty, understanding and listening to his body’s needs meant he could enjoy a social life at university and move to London to pursue a professional career in advertising. Alongside his 9-5, he embarked on a sporting adventure with cheerleading, which now takes him around the world competing for Team England.

Sometimes life can be extraordinary, yes, but it can be the everyday moments that matter most to people living with lifelong conditions such as haemophilia. Making informed choices about your haemophilia care is an important part of living the life you want.³ Understanding the different approaches to managing haemophilia - and what each one might mean for your day-to-day life can help you feel confident in the decisions you make.

For Alex, Matty, Luke and Ed advocating for themselves, speaking openly with their healthcare team and getting to understand their personal needs has enabled them to live a life full of opportunity. Whether that’s been making it to training sessions, leaving home, travelling the world, or even enjoying a Saturday night out with friends. Living with haemophilia may bring up many questions as you try to navigate the medical journey. For any health condition, it’s important to have clear and open conversations with a healthcare professional about your next steps and care plan. The NHS suggest asking these questions to get you started:⁴

By speaking openly with your doctor about the moments that matter to you, they will better understand your individual everyday and extraordinary goals, and will be better placed to give you a clearer picture of different care pathways that could fit into your lifestyle.³