Mother’s Day is this Sunday. The day dedicated to honoring mothers began in the early 1900s. It’s a special time of joy and celebration, with families going out for lunch and mothers receiving cards and flowers. That’s the picture-perfect version of what Mother’s Day looks like in a television…

Brandi’s journey with hemophilia Recently, I had the opportunity to speak with Brandi Worthington about her experiences as a woman living with hemophilia. Brandi was in her 30s when she received a diagnosis that linked hemophilia to her long-standing bleeding issues. This revelation came 23 years after the onset of…

A gene therapy being developed by ASC Therapeutics restored levels of the clotting factor missing in hemophilia A in a mouse model of the disease, and further tests in primates and human cells suggest the therapy might also work for people, the company announced. Results from…

Having a family member admitted to the hospital throws the entire family’s routine into absolute chaos. We lose our control of time, as well as our privacy. While it is great to see a friend or to hear good news from the medical staff, we are unable to dictate…

Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home.

I find myself stranded today. I had traveled from Texas to Denver for a week of classes before jetting off to Vermont for a speaking engagement. Before my arrival in Vermont, my return flight to Denver was canceled. What’s a girl to do? Having spoken at the New…

We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…

One of the best things about my relationship with my wife is our team approach to difficult circumstances stemming from hemophilia. I tend to remain calm at the beginning of a problem, while she is active toward the end. Our responses mostly happen automatically, like clockwork. We are grateful…

My youngest son Caeleb suffers from seasonal allergies. He gets severe headaches, congestion, a runny nose, watery eyes — it’s not fun. One of the telltale signs that he is genuinely sick is when he vomits from a headache; otherwise, I chalk most things up to allergies. On a Sunday…