My name is Angelo, and I am living with hemophilia in the Philippines. This condition has been a constant companion in my life, presenting unique challenges that not everyone fully understands. Hemophilia affects how my blood clots, making even minor injuries a potential crisis. This is my story of resilience, hope, and the invaluable support I’ve received from people who truly care.

Despite all the care and infusions, the aftermath of those hospitalizations left my veins delicate, making IV insertions a struggle. Even a 22G cannula, a larger-than-average needle, now poses challenges, often requiring multiple attempts to find a usable vein. I recall one hospital admission where a series of failed attempts to secure a line left me feeling exhausted and stressed. It was a wearisome experience, physically and mentally. Fortunately, my compassionate hematologist at the time understood my situation and allowed me to go home after a few successful transfusions, even though my hemoglobin levels were still below ideal. This was a small victory in a long and difficult battle.

Since my last hospitalization in 2017, I have managed my condition at home. I often choose to bear the pain of bleeds rather than face the struggles of another hospital admission. The thought of being poked and prodded again is daunting, so I’ve learned to cope with my condition as best as I can. My condition has also affected my mobility, I require crutches for support, relying heavily on my upper body to assist me in standing. Both of my feet, especially my right one, are significantly slanted and cannot lie flat on the floor, complicating my ability to move around. My knees, particularly my right knee, are severely restricted in movement, adding yet another layer of complexity to everyday life. Simple tasks like walking or even standing for long periods can become exhausting, and I often have to plan my day around my physical limitations.

Despite these struggles, I am deeply grateful for Hemophilia Advocates- Philippines (HAP), our hemophilia organization here, which has been a lifeline during emergencies. Their support has been crucial in moments when I needed help the most. Over the years, I have requested assistance for factor multiple times, with my most recent request made last October. Unfortunately, it was not granted due to low supplies that are only allocated for emergencies. While it was a challenge, I remained hopeful, knowing that support comes in many forms. In light of the situation, I turned to Ma’am Laurie Kelley, a compassionate individual known for her generosity. I shared my situation with her, and to my relief, she kindly offered to send me factor herself. Her willingness to help reminded me of the goodness that still exists in the world.

Living with hemophilia in the Philippines, where medical assistance for rare bleeding disorders is scarce and costly, has been a constant challenge. The healthcare system here is often strained, and access to specialized treatment can be limited. Although I am employed, the average salary here makes it incredibly difficult to afford the necessary treatments on my own. I sometimes worry about the future and how I will manage my condition without the support of others. Yet, through the relentless support of people like Rev. Fr. Kill, Ma’am Laurie, and HAP, I continue to find strength and hope. Their kindness has taught me that I am not alone in this fight.

This journey has taught me to appreciate every act of kindness and to stay resilient. I have learned that, while my condition presents many challenges, it has also brought extraordinary people into my life. For those of us with rare conditions, even small acts of understanding and support can make all the difference. It’s these connections that give me hope for a better tomorrow, where I can live my life with dignity, strength, and the support of those who care.