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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…

It is hard for some of the people in my community to understand why my son Caeleb struggles when he walks. Many see him as a normal 14-year-old boy who towers over me and is as goofy as the next kid. But they didn’t see him when he needed…

Over the past few years, I have learned that bleeding disorders are complex, particularly for women. Hemophilia is not always easy to understand or treat. It can take women up to 16 years to receive an accurate diagnosis. Then treatment plans are created, which can be challenging…

Like other countries, the Philippines is in a state of panic due to the COVID-19 outbreak. Schools have canceled classes well into mid-April. The possibility of lockdowns in various cities and municipalities is quickly becoming a reality. In the metropolitan Manila area where I live, authorities are about to prohibit…

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…

My 14-year-old son Caeleb is having trouble walking. Some days are better than others, but the bad days are filled with crazy pain. His right knee and ankle have sustained tremendous damage over the years from the joint bleeds that are a complication of hemophilia. His chronic…

Growing up is exciting. Most young adults spend their late teens and early 20s meeting new people and making new friends. As we grow older, we get jobs, move away from home, and date. Some choose to get married and have kids. Inevitably, we also outgrow some old friendships.

I do not like to tell people that my sons are hemophiliacs. It is not that I am blind to the reality that they have a bleeding disorder, but my boys are so much more than a diagnosis. Why address them as if they carry a title or wear a…

It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. And months are also observed for causes such as Blood Donor Month, Breast Cancer Awareness Month, and National Yoga Month. From…

Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers. Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in…