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…

Doctors in Canada are proposing a set of measures to better judge outcomes and the success of programs helping teen-age hemophilia patients transition to adult care, especially for those with more severe disease. They also listed 15 “key elements” of a successful pediatric-to-adult transition program, including eight the doctors saw as feasible…

When I’m browsing online, I often see posts dedicated to carers of people with disabilities, calling them “unsung heroes” for sacrificing time and convenience for their loved ones’ well-being. As the wife of a person with disabilities, I can attest that is often the case. I believe carers deserve recognition.

My oldest son will be moving out of the house in a few weeks to rent an apartment with a good friend of his. My mind continues to bring light to the fact that he is 22 years old. It is time for him to spread his wings and leave…

The other day, I ran across a tiny, plastic bag that contained a blue bead representing a clinic visit. My son Caeleb was part of the Beads of Courage program at the University of New Mexico Children’s Hospital. The program uses glass beads donated by artists to help…

Last weekend, I had an experience I had long dreamed about. This experience had been on my list of “things to achieve” for several years since I met my husband, Jared, who lives with hemophilia. Many women my age dream of treating themselves to a huge shopping…