Scrabble, the classic word game that has enthralled generations, is a captivating blend of strategy, vocabulary, and skill. I began playing competitively in 2010. At best, I am a mediocre player, but I love the game and am grateful for my connection to the Scrabble community. For me, Scrabble has…

My profession as a pastor allows me to celebrate with and be a source of support to members of my church. They come to me seeking a message of hope in the worst of circumstances. And the need for peace is greater when one faces surgery. When asked,…

Bleeding episodes, chronic pain, and the presence of inhibitors in children with hemophilia cause emotional stress for caregivers and increase their burden, according to an European study that recommended early access to support services. Caring for a child with hemophilia, particularly when coping with poor joint health, leads to emotional stress,…

What do all the people with bleeding disorders I’ve interviewed for this column have in common? Each of them has a story about certain doctors not listening to them. I have a story about that, too. But first, I want to acknowledge that I now receive exceptional care from…

Lately, I’ve been feeling burned out in my day job as a virtual assistant. While it helps pay the bills, the tasks are sometimes repetitive, and I often long for something that keeps me motivated for longer. Sustaining motivation is a constant challenge for me, as I’m diagnosed with attention-deficit/hyperactivity…

A preventive treatment for hemophilia B called dalcinonacog alfa (DalcA) led to an increase of more than 12% in the levels of factor IX in two patients with severe disease treated in a Phase 2 trial, reaching the study’s main goal. Researchers also found no immune reaction against the therapy. Enrollment is…

Winter is one of my favorite seasons. I enjoy the crispness in the air and wearing sweatshirts and warm, fuzzy socks by the fireplace. My son Caeleb enjoys the same things about winter, but his hemophilia and chronic pain complicate his relationship with the season. The morning is the most…

Among its corporate goals for 2018 announced recently, Alnylam Pharmaceuticals said it will continue to clinically develop the investigational RNA therapy fitusiran to treat hemophilia. Fitusiran, also known as ALN-AT3SC, is an RNAi therapeutic agent that targets a protein called antithrombin — which inhibits blood clotting — while increasing production of the…

‘Tis that season again — not the one adorned with festive decorations and holiday cheer, but the one with the formidable task of selecting a health insurance plan from the marketplace at healthcare.gov. For those contending with hemophilia or other chronic health conditions, this annual ritual can be…

When your children move into adulthood, managing their bleeding disorder becomes their responsibility. I have worked hard to prepare my adult son. He says “adulting” is not fun. I laugh and tell him that he’s joined the club. He has ordered his own factor since middle school, but I…