From haemophilia hero to ecology zero: Luke’s new chapter

Back in the 2011, I received an invitation to participate in a focus group for young people with haemophilia. The venue? The Emirates Stadium in North London—a dream for any lifelong Arsenal fan like myself (a trait that has arguably impacted my health as much as my haemophilia). It was during this gathering that I first met Mike and Kate. Their aim was to understand the experiences of young people living with haemophilia and to explore the idea of a social media networking platform tailored to those with bleeding disorders. Though the group of teenagers weren’t overly enthused by the idea, this endeavour ultimately led to the creation of Haemnet as an online platform for haemophilia nurses to connect and exchange insights and best practice.

Leaving the Emirates that day, I felt genuinely heard, and that my unique perspective had influenced Mike and Kate’s future endeavours. Over the ensuing years, I engaged in more focus groups and speaking engagements, nurturing my interest in advocacy.

University beckoned, and I pursued biology—a choice not solely motivated by my fascination with the science behind haemophilia but also by a lifelong passion for the natural world. Post-graduation, however, financial constraints steered me away from entry-level roles in ecology and conservation, leading me to stumble into the healthcare communications industry. While informative, my initial role wasn’t what I saw myself doing long term.


Then, by chance, an email from Mike invited me to a Haemnet meeting in Birmingham to share my experiences with a group of haemophilia nurses. Reconnecting with Mike and learning about Haemnet’s progress reignited my enthusiasm for bleeding disorders research and advocacy.

Inspired, I took the leap into freelancing, embarking on advocacy projects, writing, and participating in international speaking engagements. I even started to hone my videography and editing skills to create content for Haemnet’s projects. The flexibility afforded as a freelancer also permitted me to commit to my role as a Youth Ambassador with The UK Haemophilia Society. I absolutely loved the work I was doing and connected with some great people in the community.


As years passed, my involvement with Haemnet deepened, while my enthusiasm for other industry contracts as a “patient expert” waned, where the emphasis seemed to be more on my being a “patient” rather than an “expert.” I always felt that Haemnet valued my contributions to their work beyond my haemophilia status. So when the opportunity arose, I eagerly accepted a full-time position with Haemnet—a decision I’ve never regretted. The past five years have been immensely fulfilling, marked by impactful projects and invaluable learning experiences under Mike and Kate’s guidance. I really couldn’t have asked for better bosses.

However, after a decade of haemophilia advocacy and career growth within the bleeding disorders world, I’ve decided it is time for a change. It’s with mixed emotions that I bid farewell to Haemnet as I embark on a new journey in ecology—a return to my early aspirations as a biology undergraduate.

While my day-to-day focus shifts away from haemophilia, my commitment to the bleeding disorders community remains steadfast. I’ll continue to advocate, share insights, and support initiatives where needed. And, of course, my allegiance to Haemnet and its vital work will endure.

If you want to stay up to date with my journey in to ecology, wildlife adventures and continued advocacy, then drop me a follow on Instagram and LinkedIn