Sometimes, when my husband, Jared, self-infuses, I can tell when something has shifted. He has severe hemophilia B and has been self-infusing for years. He knows the process. He knows his veins. He knows how to prepare his factor and what needs to happen next. But if he…
HemoWife - a Column by Allyx Formalejo
I’ve realized that one of the greatest challenges of parenting is teaching children how to care for others without making them feel responsible for everyone’s well-being. This is especially complicated when one parent lives with a disability or chronic illness. My husband, Jared, has severe hemophilia B and epilepsy.
Here is something many people do not know about me: I spent a year studying industrial pharmacy. I don’t always think to mention it. After all, I never earned the degree. I had attended a science high school, so pursuing a science degree at university felt like the natural next…
I thrive as the wife of someone with severe hemophilia B. That does not mean hemophilia has made our marriage easy. It has brought fear, limitations, and responsibilities into our lives. It has also deepened the trust and communication between my husband and me. Over time, I have…
I’ve been thinking lately about how resilience is discussed in the Philippines. After major storms, familiar images circulate online: weddings continuing despite floodwater inside churches, people joking or swimming through flooded streets, and families smiling while cleaning mud from their homes. There is something admirable about finding humor when…
Lately, I have been trying to spend as little as I reasonably can. I decided to enter a season of aggressively paying down debt. Even writing that makes me slightly uneasy. I have a personal concern about announcing goals: Sometimes saying what I plan to do gives me enough…
Recently, my husband, Jared, and I asked our 7-year-old daughter what she knew about being a hemophilia carrier. It wasn’t a serious family meeting. There was no carefully prepared speech. She was stimming and half-playing while we talked, and at times I wasn’t entirely sure how much of the…
Due to my husband Jared’s severe hemophilia B, we keep a small, personal supply of factor replacement therapy in our refrigerator that typically is enough to cover one bleeding emergency. This isn’t a small detail for families like ours who live in the Philippines, where access to factor products…
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…
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…
