Last week, my wife, Cazandra, and I attended the National Bleeding Disorders Foundation’s (NBDF) annual symposium. As parents of two adult sons who have severe hemophilia A, or factor VIII deficiency, we’re familiar with the lay of the land. The conference provided a space for us to discover…
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I walked into the bleeding disorders conference filled with anticipation. After living abroad for over a decade, I had returned to the U.S. and was excited to connect with experts and patients to learn more about managing hemophilia as a woman. As I entered the event, I was mesmerized…
Kids have a way of flattening the extraordinary into the ordinary. My 6-year-old daughter once scraped her knee, looked down at the blood, and calmly said, “Like Daddy, because he bleeds.” Then there was the day she spotted a cockroach flipped upside down, thrashing helplessly on the floor. Without hesitation,…
Delaying the start of immunosuppressive treatment in adults diagnosed with acquired hemophilia A who are receiving Hemlibra (emicizumab-kxwh) to prevent bleeding may reduce the risk of infections and extend survival, a clinical study found. Patients in the Phase 2 study (NCT04188639 received Hemlibra for 12 weeks while immunosuppression…
Ethan Ash, a member of the Bionews team (actually, its executive vice president of business development), called me over to tell me it was my turn to hit the golf ball. He interrupted me as I was talking with Erica Millman, another member of our Bionews team and the…
The other day, a neighbor stopped me in the walkway and asked, “Are you feeling OK?” I said yes, I was fine, though I was a little surprised by the question. Then came the explanation: They’d read I have a blood disorder. That moment stuck with me. On the outside,…
As I sat in my chair at home, I heard Julian, who’s 29 and my oldest son, singing at the top of his lungs. Every note floated higher as if it would touch the clouds. My thoughts were interrupted, but I welcomed his sound, which fills my soul. Julian expresses…
Every person is a walking compilation of stories that make up their book of life. As the mother of two sons with severe hemophilia, I have the privilege of watching their books develop. One of the most anxiety-filled chapters was when they first went to day care. Memories of…
Well, it was bound to happen sometime. My first ambulance ride. I was awakened suddenly from a deep sleep at 2 a.m., my upper back in excruciating pain. A 10 out of 10. I waited a few seconds, trying to take a deep breath, to see if the pain would…
When I walked into the LadyBugs conference in Salt Lake City last weekend, the energy was immediate: part reunion, part rally, and part safe space for women who understand life with a bleeding disorder. Hosted by the CHES Foundation, LadyBugs is a program for women ages 16 and older who…