Guest Voice: Using hemophilia pain and tribulation to lift others up
I am a testament that a person with a bleeding disorder can live a meaningful life
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Having severe hemophilia A means everything can be life-threatening. In February, I had a tooth extraction that required sedation, after a year of preparation. It took that long because, here in the Philippines, a vial of factor VIII can cost up to $163, which we had to save.
Zyryenj Agoncillo, who goes by the name Gft, recovers from a tooth extraction at Philippines Children’s Medical Center in February 2026. (Courtesy of Zyryenj Agoncillo)
My father has worked relentlessly to get me medical assistance from government offices. Once, I saw him leave at 2 a.m. to get in line. He returned home at 10 p.m. and had no time to rest before going to work. After work, he prepared our food and got me ready for school.
My mom also works, and I’ve witnessed her effort and dedication. She sometimes worked longer than required because she believed it would help our family have a decent life. I thank God for such wonderful parents who sacrifice everything. I love them and hope to help them in return someday.
I survived that tooth extraction through coordination with the doctors, the dentist, and the hematologist. Living with hemophilia is hard, but even harder when your family has only enough to survive each day. My mom is also a hemophilia carrier and bleeder, which makes things even harder when we are both suffering.
A harrowing bleed
May 1, 2025, was another noteworthy hospital visit. At 8 p.m., I was fine. I could stand and walk properly. After a few hours, though, I couldn’t straighten my right leg. I thought it was another bleeding episode, and that if I iced it and rested, everything would be normal the next day. I was wrong.
The stinging pain shot from my thigh up to my hips. My mom woke up because she noticed I was moving too much and found that I had a fever. Panic kicked in, but I didn’t want her to worry because she has a heart problem. My dad asked me to rate the pain from 1 to 10. I said 8. That’s when my parents decided it was time to go to the hospital. This wasn’t an ordinary bleed. I had life-threatening symptoms.
Gft Agoncillo learns about infusion techniques and safety at the Hemophilia Advocates Philippines Master Class in April 2025. (Courtesy of Zyryenj Agoncillo)
I was recently recognized by our barangay (a small unit of government) for my first musical single, “Stronger Than My Pain,” so my mom requested their help getting an ambulance. It arrived in a matter of minutes. My dad used a donated wheelchair we’d never needed to wheel me outside, and I could see the blinding red-and-blue lights. I was scared. But if not for that ambulance, we wouldn’t have made it to the hospital so quickly.
After an initial checkup, I was moved to the emergency room, which was jam-packed. It was a good thing we’d brought our wheelchair, because there weren’t enough beds, so many patients were sitting. After 10 hours, a bed became available, but I couldn’t be transferred to a room because the ward was full.
The doctors gave instructions to infuse factor VIII every 12 hours, and I also had a CT scan after three hours of staying in bed. After two days in the ER, I was transferred to the ward. At last, I had a room.
The doctor explained that I was suffering from iliopsoas bleeding, which can be hard to detect and can be life-threatening without treatment. Fortunately, I was brought to the hospital early and received quick treatment.
My factor activity reached 95%-100%, and the CT scan was clear. I was finally cleared to go home with instructions to continue infusing factor VIII for another two days and take medication for another five days. I had no more pain in my right leg, although I still couldn’t fully stretch it.
Living peacefully with hemophilia
Despite knowing I may face another life-threatening experience, I’m at peace. I believe God will watch over me. As Romans 12:18 says, “If it is possible, as far as it depends on you, live at peace with everyone.” Without God, I doubt I would have survived or achieved anything. That’s why I trust God with all my heart.
From birth to death, I’ll live my life as normally as I can because I have great parents, friends, and faith. I am a living testament that a person with a severe bleeding disorder can still live a meaningful and happy life with support.
We may not all have the same perspective, but even my bleeding disorder can be a blessing to others. I will continue using my singing and my voice as an instrument to raise awareness and remind others that they’re not alone in this fight. Together, we will reach our goal of building a hemophilia-aware world.
We are stronger than our pain.
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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 consult your physician or another qualified healthcare 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.
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