Loneliness in marriage is a controversial subject, and one often discussed in a negative light. But in my marriage to my husband, Jared, who has severe hemophilia B and a seizure disorder, it’s a feeling that often creeps in whenever he’s stuck in bed due to a severe bleeding…

The development of neutralizing antibodies, or inhibitors, against the clotting factor in replacement therapies administered to people with hemophilia may depend on the type of product used, a recent study has found. In previously untreated people with severe hemophilia A, or those who lack…

Tampa General Hospital’s cancer institute is the first healthcare center in Florida, and the third in the U.S., to successfully administer the first and only hemophilia B gene therapy, Hemgenix (etranacogene dezaparvovec), to a patient. “The infusion of this therapy is a hallmark of the TGH Cancer Institute’s…

Last year, at the Hemophilia Federation of America‘s Mild Matters Summit in Oklahoma, I attended a session led by physical therapist Nancy Durben that left a lasting impact. Durben guided a group on a leisurely walk, urging us to savor the experience — to relish the sound…

This week, my youngest son, Caeleb, visited the pediatric clinic for his last comprehensive exam there. My mind went in a million directions as I recalled meeting his hematologist, Shirley Abraham, MD. She witnessed the tough times when my son struggled through many painful spontaneous bleeding episodes because…

The new year isn’t exactly kicking off on a high note for me. At the end of last year, I headed to Schaumburg, Illinois, to spend Christmas with my family only for my dental crown to crack in half during the trip and decide to make…

In the final days of 2023, an adult with hemophilia A named Maxwell became the first person in the U.S. to receive treatment with the one-time gene therapy Roctavian (valoctocogene roxaparvovec-rvox) — approved in June of last year — outside of clinical trials. “Receiving this treatment is liberating…

My oldest son, Julian, possesses many talents. Last August, he moved back home to save some money. He continues auditioning for theaters, hoping to make a living as a professional entertainer. I’m a little biased (OK, a lot), but his voice is in tip-top condition, and he can adequately compete…

In the middle of a work meeting, I stumbled upon an intriguing concept that resonated with me on a personal level: the good-better-best goal system. This is a goal-setting approach that allows you to set goals in three tiers that align with your individual capabilities. As I delved…

As we begin a new year, I can’t help but feel the power of hope permeate the air as conversations turn to new opportunities. Those of us in the bleeding disorders community long for new treatments that offer possibilities for a better quality of life. We pray that the…