My youngest son continues to celebrate good health. The last time he suffered a joint bleed was in February 2014. A million years seem to have passed since the days of horrific bleeds and endless hospital visits. We used to know every nurse by name on the pediatric…

When I was younger, I often yearned for a fast-paced life. As a teenager, I rarely got to leave the house by myself. I coped by working on novels while locked away in my hot, stuffy bedroom. I loved writing in silence, but a greater part of me really wanted…

It amazes me how people with a bleeding disorder just go with the flow, living their lives and accepting their routines as normal. They forget that what they do on a regular basis is nothing short of phenomenal. A little boy self-infusing is an amazing sight to see.

As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…

Enzyre is teaming up with Takeda to develop a diagnostic device that will allow people with hemophilia to determine their blood coagulation status at home. Under the collaboration agreement, the Dutch diagnostics company Enzyre will receive funding from Takeda to optimize its Enzypad technology. The goal is…

Hemophilia A patients who do not refrigerate their bleeding prevention therapy are more satisfied with it and report fewer restrictions on their daily activities, a study finds. Researchers also discovered that most of the patients were unaware that they could keep their recombinant factor VIII clotting therapy at room temperature.

My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…

“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…

The topic of fatherhood is often an awkward one to talk about with other men. To an extent, I have that same sort of apprehension as I always find myself asking the question, “Am I truly ready to take care of a child?” I imagine others may find it difficult…

I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of…