Improving mental well-being in the hemophilia community

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often goes unsaid: how rarely we talk about the emotional burden of living with a bleeding disorder.

Mental health is still stigmatized, even in communities like ours that are built around shared challenges. And when you have a condition that’s already misunderstood, it can feel risky to add one more layer of vulnerability.

The hackathon — hosted by Reuters Events and Sanofi — brought together 45 people from over 20 countries. The group included healthcare providers, researchers, advocates, and patients like me. It wasn’t just a brainstorming session — it was a call to action. We were asked to imagine and design real, practical solutions that could improve mental health outcomes in the bleeding disorders community.

Recommended Reading

February 15, 2023 Columns by Cazandra Campos-MacDonald

Having open discussions about our mental health is crucial for healing

The project was grounded in sobering data. A global survey conducted by Sanofi and The Harris Poll found that more than half of people with hemophilia rated their mental health as fair or poor. Yet 71% of those same people told their doctors they were coping just fine. That disconnect hit me hard. I’ve done the same: put on a brave face during appointments, even when I was quietly struggling.

Participants were divided into four teams, each tasked with formulating a plan to improve mental well-being in our global community. At the end of the program, each team presented their proposal in front of the full group. The presentations were judged by a panel that included Chris Bombardier, the former executive director of Save One Life and a globally respected voice in hemophilia advocacy.

Team 4’s winning hackathon proposal, called “The Power Within,” envisions a global yet locally adaptable mental health support system centered on community, connection, and accessibility. The plan includes creating a universal community hub, with a shared logo, emphasizing peer mentorship and culturally sensitive resources. It proposes global online forums featuring video chats and pen pal options, along with locally distributed materials for areas with limited internet.

The team calls for simple, translated education materials, evidence-based research on the psychological impact of bleeding, and partnerships that extend beyond traditional hemophilia organizations to include broad mental health networks. Measuring impact through engagement metrics and social listening will ensure continuous improvement and relevance across diverse communities.

It’s time to prioritize mental healthcare

The hackathon was unlike anything I’ve ever done before. It gave me a sense of purpose, but also hope that our community is finally recognizing that mental well-being isn’t an afterthought. It’s just as important as factor levels, joint health, and bleed logs. In fact, it influences all of those things. When we’re mentally well, we’re better able to advocate for ourselves, follow our treatment plans, and engage with the world.

As a woman with hemophilia, I’ve often felt invisible — dismissed, misdiagnosed, or simply not believed. That invisibility can wear on you. But during the hackathon, I felt heard. I saw firsthand how meaningful change can start with honest conversations and collaborative effort.

I hope this is just the beginning. The ideas generated during the hackathon deserve to be funded, tested, and implemented — not in some distant future, but now. We owe it to ourselves and to future generations to create a standard of care that treats the whole person, not just the diagnosis.

Mental health is not a luxury. It’s a core pillar of care. Let’s make sure it’s treated that way.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.