It started with a refrigerator leaking water out of the bottom and a YouTube video that made it seem like an easy fix. You know the kind: “Just remove the freezer door.” “Melt the ice with a hair dryer.” “You’ve got this.” It didn’t seem like a big deal, but…
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My youngest son, Caeleb, is home from college for spring break. He has no big trips to far-off hot spots planned. Instead, he’s in his room, enjoying the comfort of his bed. Our fur babies, Laggie and Hildie, enjoy spending time with their favorite human. Caeleb’s love for art and…
Knowing when to stay and when to switch providers can shape your hemophilia care journey. Learn how to spot red flags, navigate tough conversations, and advocate for a care team that truly works with you.
“Today I am thankful for warm showers and a safe place to live. Dog kisses, even when I am grumpy, make me thankful. I am thankful I did not come unglued when I was frustrated at work.” In November 2020, as part of a women’s hemophilia retreat sponsored by…
Recently, news about a deal on airfare started making the rounds in our group chats. Here in the Philippines, these sales tend to appear when people start thinking about summer travel. Cheap fares, beautiful destinations, and the thrill of booking something spontaneous can be hard to resist. Some of my…
Living with hemophilia B and von Willebrand disease means getting used to things that most people would consider unusual. Bruises appear without explanation. Minor injuries take longer to heal. A routine dental visit requires more planning than most people would ever imagine. And sometimes, the body sends…
Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders. The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the…
When my husband, Jared, has a hemophilia bleed, we know what to do. We immediately implement the RICE method of Rest, Ice, Compression, and Elevation. We also add to that list factor infusions and the monitoring of Jared’s condition. Hemophilia is complex, but there’s a strategy for managing it.
Last week in Tampa, Florida, I attended the CHES Foundation’s One Drop consortium, the largest national conference dedicated exclusively to people living with ultra-rare bleeding disorders. The program focuses on conditions that often lack the resources, research attention, and community networks that are available to those with more common…
Children with hemophilia in areas with limited medical resources face a high risk of fatal brain bleeds, a danger that is dramatically worsened by delays in seeking emergency care. A new study from Thailand reveals that without access to modern preventive therapies, more than a third of pediatric patients…