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…
Columns
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…
One thing I noticed during my son Caeleb’s frequent hospitalizations was the need for his mother, Cazandra, and I to circle the wagons to protect him and his brother, Julian. We gave friends and family updates and quick calls, but during many holidays that we celebrated in the hospital,…
The Coalition for Hemophilia B held its annual women’s retreat Nov. 14-17 in Alpharetta, Georgia. Initially scheduled for September, the event was postponed due to Hurricane Helene. Despite the delay, the retreat was worth the wait, and I was honored to attend. Since September, I have proudly served as…
My wife, Cazandra, had complicated surgery last week that required her to spend some time in the hospital, followed by at least two weeks of inpatient rehabilitation. We were in shock, as we’d thought she would spend three days in a health facility and then finish her…
Recent Posts
- Guest Voice: What I’ve gained from doing my own hemophilia infusions
- Struggling with loneliness in the early days of my sons’ hemophilia
- Even without a degree, I’ll keep finding a new path for faith and advocacy
- New study finds better mental health linked to adherence in hemophilia
- Removing blood stains: The unexpected household skill hemophilia taught me