It’s finally happened: validation. The battle to get here was rough, but perseverance paid off. Seeing “Shellye, a patient with superior mesenteric artery syndrome (SMAS), presents for follow-up visit prior to surgical repair” written in my medical records made me want to cry. I felt the same way when…

Starting Hemlibra (emicizumab) early is safe and helps to prevent bleeding in babies with severe hemophilia A who are untreated or minimally treated, though doctors should still monitor for self-reactive antibodies that can make other treatments less effective, a study suggested. The study, “Emicizumab in Previously Untreated…

Data from non-human primates suggest gene-editing therapy MGX-001 may be able to restore clinically meaningful levels of factor VIII (FVIII) after a single dose, supporting its potential as a one-time treatment for hemophilia A. Developer Metagenomi expects to meet with health authorities later this year to develop a strategy for…

I first met Connie Montgomery at the Hope Conference in Orlando, Florida, one of those rare moments when you instantly recognize a kindred spirit. Over lunch, we fell into deep conversation about women with bleeding disorders, the challenges we face, and the determination it takes to keep…

As we observe National Family Caregivers Month, I’ve found myself reflecting on a column I wrote in which I admitted that the word “caregiver” never quite fit me. That piece was about rejecting a label that flattened our dynamic into something one-directional. But there’s another truth I didn’t explore…

The energy in the room was unmistakable. Before the official start of the Hope Conference in Orlando, Florida, last week, a group of women had been invited for a special preconference event — a day set aside just for us. It was marked by laughter, the sharing of stories,…

My last home had a great fence. It was a wall of concrete blocks surrounding my backyard and stood 7 feet high. With two dogs who bark at the wind blowing, the wall deterred them from jumping and kept some of their barking at bay. However, there was an iron…

Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no…

My husband, Jared, was 11 when hemophilia changed the course of his life. He wasn’t doing anything reckless — just being a boy, jumping around on his bed. Then came the misstep, the fall, the blow to his head. He brushed it off, not realizing that a slow, dangerous…

After every storm, there’s a moment when you think the hard part is over. The winds calm, the skies clear, and you take that first deep breath of relief — only to realize the real work is just beginning: the cleanup, the repairs, and waiting for things to return to…