There is no doubt that the new medicine Hemlibra (emicizumab) is a game changer in the treatment of hemophilia. Instead of multiple infusions daily, one injection could last two weeks to a month. Such incredible new ways of approaching treatment and care introduce different concerns and result in…
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A simple tonsillectomy led to my eventual diagnosis of hemophilia B and von Willebrand disease. Without a family history, a bleeding disorder wasn’t on my family’s or pediatrician’s radar. I had to almost bleed to death for a bleeding disorder to be suspected. Terror of the tonsils The…
My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…
My husband Jared mentioned in his latest column that he works at a local organization called the Hemophilia Association of the Philippines for Love and Service (HAPLOS). It is truly a pleasure to serve other people with hemophilia, along with their families and carers, through the organization’s efforts.
When my husband, Jared, and I started dating, I was aware that he has hemophilia B and epilepsy. Not long after that, someone close to me gave me a gratuitous warning about dating someone with chronic illness. They told me I would face more challenges and…
The importance of keeping a consistent schedule cannot be understated. A solid daily routine can help you save time, be more effective, and reach goals faster. As a new mom and wife to a person with hemophilia, scheduling does not come easily. Most of the time, my schedule is…
Incidences of bleeding from playing sports are rare among people with hemophilia, and more likely to occur in those with lower levels of clotting factors — proteins that play a key role in promoting blood clotting — a study in the Netherlands has found. More specifically, the study reveals…
I recently had the opportunity to spend the afternoon with a group of teens from our local bleeding disorders organization, HACA, which stands for Hemophilia Association of the Capital Area. Some of these kids have gone to camp together for years, and some were brand new to the group.
Lessons Learned, the Hard Way
Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant! Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it…
We’ve just entered the season of Lent. This particular time in the church calendar is the 40 days before Easter. The goal is to remember divine deliverance and to prepare our hearts and minds for the joy of Easter. As a pastor in the Christian tradition, I encourage parishioners…