When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…
Columns
Last April, I had the privilege of attending the Coalition for Hemophilia B’s annual symposium in Dallas for the first time. It was a transformative experience filled with educational sessions, meaningful social connections, and a shared passion for advancing care within the hemophilia B community. The event brought together…
For many years, my wife, Cazandra, played in the orchestra at Houston’s First Baptist Church in Texas. Her musical ability was second to none. I loved hearing the passages she played as she soared up to beautiful high notes with phrasing that made my heart melt. We had a…
I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference? Answer: Beautiful business casual clothing and sensible shoes! I’ve had a love-hate relationship with shoes over my lifetime. From a very early age, my parents and pediatrician noticed my ankles…
Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…
Dear Santa, This year, I’ve decided to pen a special letter to you — not for myself, but for the global hemophilia community. As the holiday season fills the air with hope and goodwill, I can’t help but reflect on the challenges and dreams of those of us living…
Earlier this week, my youngest son, Caeleb, and I parked my car and walked to the financial aid office at the University of New Mexico, where he’s a freshman. As we walked, we talked about him registering for the spring semester. He expressed concern that he wouldn’t get into the…
“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…
While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…
On Nov. 19, I had the privilege of participating in a panel at the Plasma Protein Therapeutics Association’s Plasma Protein Forum in Washington, D.C. Robert F. Sidonio Jr., MD, a pediatric hematologist-oncologist, joined Nikole Scappe-Hagen, the National Bleeding Disorders Foundation’s manager of education, and I to lead…
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