My husband, Jared, had a knee bleed last week. The moment he felt the familiar twinge in his joint, he performed his usual treatment regimen: a factor infusion and bed rest. We thought we’d simply wait it out without doing anything special besides resting the injury…
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Allyx Formalejo writes columns about hemophilia, often drawing on her experiences with her husband, Jared, who has severe hemophilia B. Her work emphasizes learning and adapting to hemophilia bleeds, understanding their nuances, and the importance of movement. She also discusses the need for support and avoiding infantilization for those with hemophilia.
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When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…
After a decade of living alongside my husband, Jared, and his severe hemophilia B, I’ve learned that not all bleeding is as straightforward as it may seem. Bleeds vary widely, not just in size but in severity and impact. What might look minor can be excruciating, while larger bleeds,…
While cleaning up recently, I found a physician-authored exercise guide from 2002 for Filipinos with hemophilia. It was fascinating to read, especially knowing that at the time, synthetic factor products were still scarce here in the Philippines. Treatment options were limited, and many people with hemophilia still relied…
The new year ushered in an unexpected surprise: the near demise of my six-year-old laptop. I lifted the rose gold aluminum top expecting business as usual only to find a huge black line running from the top of my screen to the bottom. To my horror, I also discovered the…
When I tell people I’m married to someone with hemophilia, I get different reactions. Some people are genuinely curious and want to know more about my husband’s condition. They’ll ask several questions about the hows and whys of his bleeds, and are often curious about treatment. On the other hand,…
Navigating life with hemophilia in the Philippines presents unique and daunting challenges. The financial burden of treatment is one of the most significant hurdles hemophiliacs face. A 1,000-unit vial of factor IX costs up to 22,000 Philippine pesos (about $377), yet the minimum monthly wage is…
My husband, Jared, and I both have marketing backgrounds. We’re used to thinking in terms of value. In branding, you ask: What makes this product worth noticing? What problem does it solve? Why should people care? It’s strange to apply that mindset to something like hemophilia. But when you…
Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…