Helping people brings me joy. As a hospice chaplain assisting families through their darkest hours, I am truly fulfilled. Outside of my work, my heart is full when I can make dinner, pick up groceries, or visit a friend. But asking for help is an entirely different thing. During my…

My wife, Cazandra, and I enjoy speaking on topics critical to the bleeding disorders community, as both of our adult sons live with hemophilia. A few weeks ago, we had the chance to lead a seminar called “Telling Our Stories” at the National Bleeding Disorders Foundation’s (NBDF) annual…

During November, many people participate in daily gratitude challenges on social media. Finding something to give thanks for is easier on some days than others. Some seasons are filled with grateful moments, while others are filled with grief, sorrow, and exhaustion. My youngest son, Caeleb, is 16 years old…

A single dose of Roctavian (valoctocogene roxaparvovec-rvox), a gene therapy for severe hemophilia A from BioMarin Pharmaceutical, maintains factor VIII (FVIII) levels at near-normal or normal levels for up to five years, with most patients staying off prophylaxis, or preventive treatment. These lasting benefits were observed in GENEr8-1…

Researchers investigated self-reported health-related quality of life (HrQoL) in children and adolescents with hereditary bleeding disorders, such as hemophilia A, and found no differences between patients and their healthy siblings and peers. The research paper, titled “Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders…

The likelihood that teenagers and young adults with hemophilia will use a prophylactic replacement therapy as prescribed is mostly influenced by their level of responsibility in taking their infusions, and their own estimates of risk for each activity, a study suggests. To improve treatment adherence, doctors should discuss its importance during…

One year of treatment with Elocta (efmoroctocog alfa) — an extended half-life replacement therapy known as Eloctate in the U.S. — reduced the frequency of bleeds in the elbows and knees of adults with severe hemophilia A, a Spanish study showed. Reduced pain intensity in the elbows also…

Buckets. Buckets and buckets of tears. That’s the only way I can describe the tears I have shed over the years because of living with hemophilia in my home. Both of my sons have had their own struggles with hemophilia and inhibitors, and the tears I have shed…

The U.S. Food and Drug Administration (FDA) has granted breakthrough therapy designation to efanesoctocog alfa, an experimental replacement therapy for hemophilia A designed for once-weekly dosing. This designation is given by the FDA to help speed the development and review of treatments for serious or life-threatening conditions. Specifically,…

I’ve previously written about fellow Floridian Kayla Mack, a woman in her 50s who has Type 3 von Willebrand disease (VWD). Her severe bleeding disorder is similar to those who deal with severe hemophilia, as her blood clotting factor VIII levels are nearly negligible. Her von…