Columns

Say it with me: Disability is not a bad word

When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the positive thinking movement even argue that people with hemophilia shouldn’t see it as a disability, pushing…

It’s time for women with bleeding disorders to be seen

Women like me often wonder how the hemophilia community has overlooked us for so long. The stories of women labeled as mere “carriers” — despite experiencing life-threatening bleeding episodes — are endless. For decades, we’ve lived with symptoms that disrupt our lives, yet we were dismissed, misdiagnosed, or told…

Valentine’s Day wishes for my sons with hemophilia

Valentine’s Day is a holiday that celebrates love. However, the day’s origin doesn’t involve a hard-to-get dinner reservation, the perfect Valentine’s card, and the best box of chocolates, but rather a martyred saint and a massacre. Fortunately, our 21st-century world has a more pleasant understanding of the day. While this…

When an invisible disability is only seen as attempted fraud

An unfortunate incident recently made waves on social media here in the Philippines, where I live, when a restaurant chain posted a dismissive, sarcastic message about fake disability IDs. The poster questioned whether 30% of its customers were truly disabled and mocked those with invisible disabilities. It also reduced…

Are hemophilia treatment centers in danger?

Since my diagnosis at age 10, I’ve always received treatment at federally funded hemophilia treatment centers (HTCs) — except for a brief period when my insurance didn’t cover my hematologist. Most hematologists don’t specialize in bleeding disorders, which can be complex to diagnose and treat. Without the expert care provided…