Lately, I’ve come across more conversations about what it means to live independently with a bleeding disorder. They usually focus on big milestones: moving out, going to college, starting a career, or taking charge of one’s own healthcare. It made me curious, especially now that my husband, Jared, and I…
HemoWife - a Column by Allyx Formalejo
Recently, I posed a question to Hemophilia News Today readers on social media for Disability Pride Month: “Do you consider hemophilia to be a disability? Yes, no, or somewhere in between?” The question prompted a wide-ranging public discussion. Some considered hemophilia to be a disability because of its…
The scream echoed through our house, loud enough to rattle the windows. For a moment, I wondered what the neighbors must have thought. My husband and I were walking up the stairs when he accidentally scraped his hand against the railing. It wasn’t a particularly hard hit. Most people probably…
Someone recently told me they thought they were experiencing arrival fallacy. I’d heard the term before. It describes the feeling of reaching a long-awaited goal, only to discover that it doesn’t bring the lasting happiness you imagined. After the excitement fades, life feels surprisingly ordinary again. Before long, a new…
I don’t usually ask myself whether I want something. I ask whether I can justify wanting it. Is it practical? Financially responsible? Useful enough? Meaningful enough? Will I regret spending the money? Could I explain the decision to someone else without sounding irresponsible? I suspect many care partners know this…
When I first started writing for Hemophilia News Today in 2018, I never imagined it would become part of my career. At the time, I was a young woman preparing for marriage and trying to make sense of life with hemophilia. I had stories to tell, lessons to…
I’ve noticed something strange over the years: Adults with hemophilia sometimes disappear from conversations that were built for them. I first noticed it in support groups. The louder caregivers became, the quieter some people with hemophilia seemed to get. Some stopped participating altogether. Others drifted toward spaces led by…
Every June, my social media feeds fill with rainbows. My LGBTQ+ friends celebrate Pride Month, while others share deeply personal stories about identity, belonging, and acceptance. Some are hopeful, some heartbreaking, and most carry a bit of both. Every year, I read those stories and find myself thinking about my…
If you’re raising a child with hemophilia, I understand the fear. It starts early — before sports, sleepovers, and field trips, and often before they’re old enough to understand their diagnosis. You learn about joint bleeds, head injuries, emergency room visits, and all the things that can go wrong.
I rarely participate in support groups on social media because some interactions leave me feeling more emotionally drained than supported. To be clear, there are genuinely kind and generous people in these communities. Many families have found lifesaving information, financial assistance, practical advice, and emotional solidarity through them. In…
