I met with my mighty warrior’s new principal and school nurse last week. I took my presentation, and thanks to the Hemophilia Federation of America, I was ready to teach and answer questions. Most importantly, I wanted these individuals to feel at ease and not scared of my son.

My son Caeleb begins his sophomore year of high school in a few weeks. Before school starts, he will participate in summer band. Summer band was a highlight of my high school days. Even marching outside in the heat was fun because working with a tightknit group to put on…

Europeans with severe hemophilia are largely satisfied with available treatments and able to maintain active lives, according to a survey of healthcare professionals by the biopharmaceutical company Sobi. Results also showed that 23 countries across Africa, South America, and Asia rely entirely on the World Federation of Hemophilia…

I’ve been living with chronic pain for several years. When I’m asked whether I had an accident or trauma to my neck and back, my answer is no. But I think hemophilia indirectly triggered my pain. Years ago, when my youngest son, Caeleb, was in a wheelchair, I think…

SerpinPC, an investigational treatment that Centessa Pharmaceuticals is developing for hemophilia, will advance to interventional Phase 2 clinical testing later this year. The studies will support Centessa’s registrational program for hemophilia B. Such a program involves clinical trials that ultimately will lead to the company seeking regulatory approval…

Bone mineral density — the amount of minerals in bone tissue — is markedly lower in children with moderate and severe hemophilia than their healthy peers as a result of recurrent bleeding episodes that damage their joints, according to a small, single-center study in India. Preventive, or prophylactic, treatment was…

I sat in a hotel ballroom with hundreds of people who gathered to pay tribute to their loved ones. The names and pictures of the dearly departed appeared on giant screens at the front of the room. Many people had their cellphones ready, anxiously waiting to capture the image…

Before cellphones, memorizing phone numbers was a necessity. Racing home to make a phone call on the landline was how I made plans with friends and scheduled appointments. With smartphones, I can make a call with the touch of a button, no matter where I am. Although I no longer…

Jason Fulton was accepted to the University of the Pacific in Stockton, California, to pursue a graduate degree in pharmacology and help hemophilia patients like himself. But the 22-year-old knew then he likely would not achieve his dream. At 17, he learned the blood he was receiving to treat…

When my husband, Jared, and I first started our online jewelry store, we knew our business was not going to be like other enterprises in the market. He lives with hemophilia and epilepsy, while I am diagnosed with anxiety and depression. We feared that bleeds, seizures, and mental breakdowns would…