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Bleeding Disorders Awareness Month features education, advocacy

March is Bleeding Disorders Awareness Month (BDAM), and patients, caregivers, advocates, and supporters are working together to call attention to and provide resources for coping with the bleeding disorders estimated to affect more than 3 million people in the U.S. Bleeding disorders such as hemophilia, von Willebrand disease, and…

In our family, action is the antidote to fear

There’s a saying that’s been on my mind a lot lately: “Action is the antidote to anxiety.” It resonates deeply, especially in our household, where uncertainty is part of daily life. My husband, Jared, has severe hemophilia B and epilepsy — two conditions that bring unique challenges. Together, they…

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…

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…