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What it’s like managing hemophilia with an inhibitor, part 1

First in a series. Every person is unique, shaped by the combination of their upbringing, education, cultural influences, values, attitudes, and behaviors. No two people are exactly alike. Even identical twins, while genetically similar, have differences, including their fingerprints. Medical conditions can also emphasize a person’s individuality. While many may…

Flying through the air, even with hemophilia

The song “The Daring Young Man on the Flying Trapeze,” lyrics by George Leybourne and music by Gaston Lyle, plays loudly in my mind. As a child, I loved the lines “He’d fly through the air with the greatest of ease/ That daring young man on the flying…

The hidden symptoms of hemophilia we rarely talk about

When people hear the word “hemophilia,” they often picture severe bleeding, bruising, or swollen joints. Those are the visible symptoms, the ones doctors, nurses, and even family members understand. But living with a bleeding disorder is so much more than what meets the eye. There are symptoms we…

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…