When a spouse or partner has a bleeding disorder like hemophilia, occasionally there may be situations that make us wonder if they are at fault for an injury they’re battling. Perhaps they went beyond their maximum physical capacity in sports or at work. Maybe they got caught up…
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Note: This column describes the author’s own experiences with Mounjaro (tirzepatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In a previous column, I shared my journey of embarking on a weight loss program using the type…
Looking at myself now, my younger self never would have expected me to be where I am. Recalling my younger years, I remember having anxiety about being alone when I grew up. I always thought I’d have a hard time finding a partner and that my dating life would be…
My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy. We recently…
Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…
Finding Answers Together
Both of my sons have expressed frustration at having a bleeding disorder. After experiencing a problematic infusion, each has cried out, “I hate having hemophilia!” While they are almost 10 years apart, the same response lets me know that they are “getting it.” Sticking a needle in a child’s arm…
Immune tolerance induction (ITI), a type of treatment that’s designed to eliminate neutralizing antibodies, or inhibitors, against clotting factors for people with hemophilia A, may work just as well across different racial and ethnic groups, a study finds. The findings don’t “support the hypothesis that ITI response varies according…
Even now, I hesitate to tell doctors I have hemophilia. I’ve lost count of how many times I’ve been met with blank stares, skepticism, or outright dismissal. Instead, I’ve learned to say, “I have a bleeding disorder.” It’s safer. It avoids the uncomfortable silence, the subtle smirk, or the…
A Phase 3 extension trial has confirmed Alprolix’s long-term ability to prevent bleeding episodes in hemophilia B patients, and its safety. Those in the B-YOND extension trial did not develop an immune response against Alprolix. Adults and adolescents were treated for three years, and children under 12 for 18 months. “These results…
InSourceRx is partnering with the National Hemophilia Foundation (NHF) to help those with inheritable blood disorders, such as hemophilia, better afford medications. InSourceRx is a pharmacy discount card company that teams up with nonprofit and patient advocacy organizations to provide discounts for essential medicines and supplies. Blood…