I’m happy to finally be an official member of the Father’s Day club. I’ve learned much from the way my own family raised me. It’s an uphill battle raising our daughter Cittie with the occasional bleed dragging me down. But seeing her mature so quickly…
The ‘I’ in Hemophilia
— Jared Formalejo
Jared Formalejo lives with severe hemophilia B and epilepsy. He is a writer, father, and advocate for patients and caregivers, and is married to Allyx Formalejo, who has a regular column on Hemophilia News Today, “HemoWife.” Jared explores disability, identity, and the cultural narratives that shape how chronic illness is understood and lived.
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It’s a struggle to balance life with two disorders. I need to take daily medications for epilepsy while also self-infusing to treat internal bleeds. I recently suffered a horrible epileptic episode. My wife, Cza, and I were walking with our baby, Cittie, when I felt a strong aura warn…
I’ve found the stress of my first two months of fatherhood overwhelming. We’ve had many sleepless nights as we’ve adjusted to meeting the constant demands of a crying baby. My wife and I are incredibly sleep-deprived. But seeing my child smile when she sees my face first thing in the…
Looking at myself now, my younger self never would have expected me to be where I am. Recalling my younger years, I remember having anxiety about being alone when I grew up. I always thought I’d have a hard time finding a partner and that my dating life would be…
As I write this, I’m bedridden from a bleed in my right hip. I’m learning what it means to have both hemophilia and a baby girl. Although I could see this bleed as a spirit-breaker, I’m readjusting, and I’ll be better prepared for episodes like this in the future.
Editor’s note: After this column was written, Jared and his wife welcomed a healthy baby girl, Melanie Citrine, on Jan. 18. Congratulations! My wife is 38 weeks pregnant. I’ll soon be a father. That fact is becoming more real to me every day. I have many questions: Will I be…
I was born into this world with hemophilia. As a child, it was a reality I had to face, and I have no one to blame for my misfortune. Did I want to be born? Did my parents intend that I have a different life? No. It would be wrong…
My local hemophilia organization just held its annual Christmas party. During these celebrations, we are reminded that we belong to a community that empowers, cares, and provides us with support and service. Christmas is a time for giving, showing gratitude, and spreading love. During our Christmas party, it was heartwarming…
An important part of my role in the Hemophilia Association of the Philippines for Love and Service (HAPLOS) is the promotion of physical fitness and exercise. I see many young hemophiliacs strapped to wheelchairs and wearing protective gear. It pains me to see them deprived of the ability…
Time flies so surprisingly fast. It just dawned on me that I’ll be a father in three months; my wife, Cza, is already 26 weeks into her pregnancy. There’s a lot of pressure, but I hope that my kid can be proud to have me as a father. It’s of…
It’s rewarding to be able to serve my fellow people with hemophilia. I have often mentioned the Hemophilia Association of the Philippines for Love and Service (HAPLOS) in my writing. I want to dive deeper into the work that we youth members do to serve our community. Honestly, I…
I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. It’s time for me to fly on my own, be independent, and take care of myself. Recently, I had a string of bleeding episodes. It was difficult for me to put a smile on my face.
It’s not easy to live with hemophilia in the Philippines. When we hear stories of hemophilia care around the world, it’s hard not to feel envious of hemophiliacs outside of our country who receive proper healthcare and can live a normal life. In this column, I will tackle the issue…
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