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…
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March is Bleeding Disorders Awareness Month (BDAM) and patients, caregivers, advocates, and other supporters are coming together to call attention to conditions like hemophilia and von Willebrand disease that impact more than 3 million people in the U.S. Bleeding disorders are marked by uncontrolled bleeding that occurs from a…
A new year is always filled with possibilities and hope. After living through 2020, most people are looking forward to what is yet to come. While I am not one to make resolutions, there is one thing I will be working on this year. It does not involve me,…
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…
COVID-19 has upended our lives. It is hard. As an individual with a chronic condition, I find myself worrying about how it will affect me in ways that may be different from those of my neighbors or co-workers without chronic conditions. Thankfully, the hemophilia community has…
My husband, Jared, and I were recently talking about Rare Disease Day, which falls on Feb. 28. As a person with hemophilia, Jared has faith in its purpose of raising awareness about rare health conditions and the people who live with them. Having dabbled in hemophilia and mental health…
As I write this, it’s Nov. 1 and we’re observing All Saints’ Day. On this day, I remember my mom, who passed away last June. Her final resting place is many islands away from where I live, so I am unable to pay her a visit. Nevertheless, I offer…
The U.S. Food and Drug Administration has approved Novo Nordisk’s Rebinyn (nonacog beta pegol) as a routine preventive treatment for bleeding episodes in adults and children with hemophilia B. Rebinyn, sold under the brand name Refixia in the EU, is a replacement therapy that had originally…
In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…
The first participant has been dosed in a Phase 2b clinical trial that’s assessing the safety and efficacy of SerpinPC in people with hemophilia B who have inhibitors, according to an announcement from its developer, Centessa Pharmaceuticals. “We are excited to be further evaluating the potential of…