I’m a hospice chaplain, and one day I was at the nurses’ station, completing my notes from a patient visit, when the fire alarm sounded. Startled, I turned to the nurse, who said the alarm had been going off all day due to a system glitch. The piercing, unrelenting sound…

The first gene therapy for adults with hemophilia B — branded as Hemgenix (etranacogene dezaparvovec) — has been approved by the U.S. Food and Drug Administration (FDA). Meant to be a one-time treatment, Hemgenix is expected to keep bleeding in check in the long term, while also allowing patients…

When you are around someone day in and day out, there are things that you don’t notice. A few pounds lost, a change in mood, or even a change in their daily habits. My 14-year-old son Caeleb has endured quite a bit of trauma over the years as a result…

Last week, my husband had another random bleed in an extremely unfortunate location: his iliopsoas muscle group. It started as a lump on his hip, which he didn’t initially think much of because bruises with swelling are common among people with hemophilia. He didn’t realize it was another bleeding…

I cut my thumb above my knuckle a few weeks ago. It didn’t seem like a big deal, but five Band-Aids later, I began to wonder. A few hours later, I noticed my knuckle was swollen, painful, and a bit blue. My thumb wouldn’t bend, and the swelling extended down…

Affirmation: one word with significant connotations. From the day we come into this world, we seek an acknowledgment that our presence on this planet matters. To be affirmed by those around us reinforces the idea that our contributions to our community hold special significance. When we hear others give…

A newly identified class of stem cells in blood vessels, called vascular endothelial stem cells, were able to repair injured vessels and ease bleeding symptoms in a mouse model of hemophilia, researchers at Osaka University in Japan report, suggesting these cells may treat this bleeding disorder. The vascular endothelial stem cells, or VESCs,…

It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times, women with hemophilia have struggled for years to obtain a proper diagnosis and appropriate care.

The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) jointly launched the “Together Project,” in which the two organizations will work together to address issues affecting the bleeding disorders community. Most of the partnership’s efforts will center on written content creation and visual designs, which…

Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…