My youngest son, Caeleb, recently turned 15. A celebration with his favorite dinner accompanied by homemade chocolate-peanut butter cheesecake ushered in another year filled with goals and dreams. After Caeleb blew out the candles, he looked up and said, “In three years I’ll be out of the…

Last Friday, my youngest son, Caeleb, finished the first week of his final year in high school. He’s a mighty senior ready to conquer the world with his incredible artistic abilities. Growing up, my son experienced hemophilia-related medical issues that most people could never imagine. I think of his…

Second in a series. Read part one here. I have been on medication for my clinical depression for over 25 years. There is no other option. Even throughout my second pregnancy, I took medication under my psychiatrist’s supervision. I’ve never been ashamed to admit my need for medication,…

Bleeding rates and the use of replacement therapies among men with severe or moderately severe hemophilia B remain low at least three years after a single dose of the approved gene therapy Hemgenix (etranacogene dezaparvovec). That’s according to updated data from the Phase 3 HOPE-B clinical trial…

When you have a bleeding disorder and you are traveling, there are many things to remember. Forgetting factor or Huber needles can leave you in a bind, because these are not items that are easily found at your local drugstore. Making a list and keeping it handy, regardless…

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…