At 32, Ashley Zebley from Arkansas is no stranger to bleeding disorders. I recently interviewed her over the phone. Ashley explained that her father has severe hemophilia B, and both her maternal grandmother and great-grandmother exhibited bleeding problems, although neither was diagnosed with hemophilia. Ashley herself is a…

Normal. I’m not exactly sure if I know the definition of normal. I’m thinking that most normal people would probably not suffer from any kind of illness. No allergies, diabetes, pain or infusions would be part of a normal person’s life. When you live with a chronic condition,…

Adults with severe hemophilia B have a persistent number of bleeds per year, as well as joint problems and mild to moderate chronic pain, revealing an unmet medical need in these patients, according to real-world data from the European CHESS II study. The study, “Clinical, humanistic, and economic…

When you become a parent, your world instantly changes. Your life focus becomes the child that you have brought into the world. When your child has a chronic condition, the game changes dramatically. Not only are you concerned about the regular milestones that your child may or may…

A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be…

One thing that struck me over the head when I became a parent was an awareness that I bring my whole self to the table. When treating bleeds and other surprises, I show up with what I know — no more, no less. I cannot respond to my child beyond…

There’s often a children’s time at church when the kids race up to the front and sit with the pastor, where a message is geared to the children. When my husband leads this moment during worship, he asks questions and even takes the kids on “field trips” around the sanctuary.

Hello, hiring managers and human resources (HR) professionals! I’m writing this column to you, as the spouse of a person with disability (PWD). My husband, Jared, has severe hemophilia B and a seizure disorder, and we worked together at the same company for a year. I’ve also seen him…

Monsters come in all shapes and sizes. Some take the form of needles that terrify young children. Others terrorize us as we battle chronic illnesses. Scary creatures reveal themselves and change us because of the horrors they bring into our lives. Ghosts and shadows leave us breathless and…

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.