I will never forget the first time we visited my wife’s OB-GYN following the birth of “MacDonald the Older.” It was 1996, and the world of hemophilia looked much different than it does now. Synthetic products were making their way into the market. Nightmares regarding the “hemophilia…

Two potential gene therapies — AMT-060 and AMT-061 (etranacogene dezaparvovec) — lead to safe and long-term increases in factor IX (FIX) activity, as well as fewer bleeds among patients with hemophilia B, according to the therapies’ maker, uniQure. The company announced in a press release that…

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. Life seemed to be moving at a healthy pace, and my wife and I invited the newest member of the…

Gentle exercise has many health benefits, particularly for anyone suffering from a chronic illness. In this video, personal trainer Ryan Krane demonstrates some simple exercises that can help counter the effects of chronic fatigue. MORE: Although there’s no cure for hemophilia, there are ways that to manage the disease…

A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…

What does your pain feel like? Is it burning, sharp, pulling, shooting, or achy? Describing pain is difficult. In fact, many words used to describe pain are metaphors or similes: It’s like being stabbed by a knife or burned by a hot stove, for example. Yet a lot of people…

My 14-year-old son Caeleb is having trouble walking. Some days are better than others, but the bad days are filled with crazy pain. His right knee and ankle have sustained tremendous damage over the years from the joint bleeds that are a complication of hemophilia. His chronic…

Dear Chronically Ill Partner, I know life isn’t always easy for you. You have grown up believing life dealt you a terrible deck of cards. You’re no stranger to the feeling of suffering. At one point or another, you’ve even questioned the motives of the universe in…

Earlier this week, I stopped the car and let my youngest son, Caeleb, out for his first day as a junior in high school. I looked at him and told him that I loved him and that this year could be the start of something extraordinary. His laugh let me…

Prophylactic replacement therapy to prevent bleeds was more cost-effective than on-demand treatment of active bleeds for children and adolescents in China with moderate or severe hemophilia A without inhibitors, a study reported. The superior cost-effectiveness of prophylaxis over on-demand treatment was mainly driven by the on-demand costs of treating…