Last week, my husband, Jared, tested positive for COVID-19. He had been experiencing a tickle in his throat for the last couple days but didn’t have other symptoms. Then he woke up with a persistent cough and decided to get tested. As we were driving to…

Ten U.K. families who are members of the Haemophilia Society have the chance to enjoy a free, virtual Camp in the Cloud experience offered by Over The Wall, a nonprofit specializing in activity camps for children living with serious disorders. The places, each worth £150 (about $206), are available on a first-come,…

There are multiple types of medical trauma. A medical emergency can be traumatic. Chronic medical issues can be traumatic. Struggling to obtain a diagnosis and treatment is traumatic. I believe that one of the most consequential results of suffering medical trauma is the subsequent refusal to engage with medical professionals.

Now and then, I think about my own health. I wonder if I’m caring for myself enough, or if my husband’s illnesses might be standing in the way. When health issues unexpectedly crop up for him due to his hemophilia or seizure disorder, certain worries are inevitable. What if…

Over the past few years, my youngest son has developed pain in joints that were damaged by internal bleeding episodes. As a result, he struggles some days to walk due to an arthritis-like ache. His hematologist prescribed the medicine Celebrex (celecoxib) to help with inflammation, which decreases…

Preventive treatment with marzeptacog alfa activated (MarzAA) can reduce bleed frequency substantially in men with hemophilia A or B who developed inhibitors to conventional replacement therapies, according to data from a Phase 2 clinical trial. The findings were reported in the study, “Subcutaneous engineered factor…

I recently took a second freelance job to help move my family forward despite the challenges of the pandemic. I’ve only been at it for two weeks, but so far it’s been good. I’m praying for a good working relationship with my boss, and for my own personal growth in…

Treatment with the investigational gene therapy Roctavian (valoctocogene roxaparvovec) can reduce bleeding frequency and the use of replacement therapies, while maintaining or improving the quality of life of people with severe hemophilia A for up to five years, updated Phase 1/2 trial data show.  “These…

Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event aimed at celebrating the community and underscoring the need for treatment for all. Unite Day complements participation in the annual Unite for Bleeding Disorders Walk, both presented by the…

Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…