Hemophilia is a lifelong condition, both for my husband, Jared, and me. He’s had hemophilia B since he was born, and until a cure is found, it’s here to stay. While I don’t have hemophilia, we both must live with it. I imagine hemophilia to be like a…

Recent studies have addressed the importance of preventive, or prophylatic, treatment in severe cases of hemophilia, and its long-term benefits for children. The results may help establish guidelines and treatment recommendations leading to improved care for such kids. Both the World Health Organization and the World Federation of Hemophilia urge preventive treatment…

My husband pastors the local First United Methodist Church, where I serve as a deacon. When a parent (or two) goes down the pastoral path, their children are along for the ride. Some preachers’ kids love church, and others, not so much. My youngest son, Caeleb, falls…

Shire has launched a Phase 3 clinical trial (NCT02585960) with Adynovate, a drug approved to help treat and control bleeding in children and adults with hemophilia A. The trial is currently recruiting participants. Adynovate is an injectable recombinant factor VIII (FVIII), designed using pegylation technology, which allows it to last…

I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…

In recognition of World Hemophilia Day 2018, the biopharmaceutical company Bioverativ is sharing the stories of people with hemophilia in the developing world to highlight the life-changing potential of adequate treatment. In honor of this year’s theme, “Sharing Knowledge Makes Us Stronger,” Bioverativ will collaborate with members of the hemophilia community…

Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain.

Hemophilia gene therapy Beqvez (fidanacogene elaparvovec), marketed as Durveqtix in the European Union, results in stable production of factor IX (FIX), the clotting protein that is missing or faulty in hemophilia B, leading to about three times fewer bleeding episodes compared with prophylaxis, or preventive treatment, with regular infusions…

The high incidence of hypertension among hemophilia patients may not be associated with common cardiovascular risk factors, such as obesity, cholesterol and smoking, according to a new study. The researchers call for more studies to uncover possible links between hypertension and hemophilia. The study, “The Hypertension Of Hemophilia Is…

First, I want to make something clear. This column isn’t titled “In the Twinkling of an Eye: The Money Issue.” When I speak of investing, I mean directing our energy to different areas of our life. Think of it as depositing essential acts of kindness and assistance to those we…