I’ve been struggling with hip bleeds lately. I’m in the middle of recovering from a bleed on my right hip, which may have started because I put too much pressure on it too soon. I’m frustrated that I’ve been bedridden so often these past few months. It’s hard…

My local hemophilia organization just held its annual Christmas party. During these celebrations, we are reminded that we belong to a community that empowers, cares, and provides us with support and service. Christmas is a time for giving, showing gratitude, and spreading love. During our Christmas party, it was heartwarming…

I do not have hemophilia. My sons are the ones who live with a chronic bleeding disorder, and at first, I struggled to find something we might have in common. My wife and I are musicians, and the running question during my wife’s pregnancies was, “What if they are…

uniQure has achieved its target patient enrollment goal ahead of schedule for its ongoing Phase 3 HOPE-B trial. The trial is assessing the safety and efficacy of AMT-061 (etranacogene dezaparvovec), the company’s investigational gene therapy for the treatment of patients with moderate and severe…

Hemophilia patients with a low number of red blood cells and reduced coagulation factor levels — the activity level of proteins essential for blood clotting — are at a higher risk of increased blood loss during a knee replacement surgery, a study reported. The study, “Risk…

When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there. She told me I was the perfect choice because I understand hemophilia, its treatment,…

Most people probably don’t think twice about getting dressed. For me, it’s never just about what looks good. It’s about what feels right. Every morning, a quiet calculation happens before I even leave my closet. What am I doing today? How far will I be walking? Will I be sitting…

Sangamo Therapeutics recently presented what it characterized as key improvements to its technology platform for engineering highly specific zinc finger nucleases (ZFNs), which are used for targeted editing of the human genome. This technique has broad applicability, namely for the treatment of hemophilia B and other disorders. The…

As I write this, I’m bedridden from a bleed in my right hip. I’m learning what it means to have both hemophilia and a baby girl. Although I could see this bleed as a spirit-breaker, I’m readjusting, and I’ll be better prepared for episodes like this in the future.

I’d enjoyed several months without any bleeding problems until I experienced an unexpected ankle bleed last week. The elevator at my condo was out of service, so I had to climb four flights of stairs multiple times a day, which put additional strain on my joints. Just when I…