How Blood Brothers Support One Another

Untitled Document

We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines.  We just finished Hemophilia Awareness Month, and now are heading towards World Hemophilia Day, April 17. I’d like to focus on a few stories of people with hemophilia who live in developing countries. If you know me at all, you know this is where my greatest passion lies—to help those in need who have little to no access to factor. When you read that a child has died from a tooth extraction, or a bloody nose, or that a promising young man has died riding his motorbike in the congested cities in developing countries, it breaks your heart. Our children in America strive to play sports, and live with no bleeds. The other 75% in the world just want to live… here is one story from the Philippines.

In 1990 my twin brother Luigi, age one, had a swollen left knee. Our parents had him tested, and he was diagnosed with severe hemophilia A. Because we are twins, I was tested too, and also diagnosed. It was very tough living with hemophilia, especially without access to factor VIII. We just took pain medication when we were in pain. My worst, most painful bleed was in 2008. I was coughing hard for days, and then I felt a small pain in my lower abdomen. Ignoring it, I went to school. There I felt the pain worsen, and I had trouble urinating. It seemed that something was blocked inside me, and my lower abdomen was swelling. I went to the hospital and was confined for seven days. The doctors did an ultrasound and inserted a catheter so I could urinate.

I was told it was good that we rushed to the hospital, as the internal bleeding was worsening and might have been fatal. I was infused with factor VIII for five days. This cost a lot, and we had no money then, so my parents went fully into debt. A year later, Blood Brothers Aid was established by a group of men with hemophilia in Manila. My brother and I were among the first board members!