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…

Recently, I discussed an issue with several men with whom I meet on Monday mornings. We talk about various topics, and that morning’s conversation centered around the idea of forgiveness. For a healthier life, we must let go of resentments and embrace change. Only through surrendering our pain can…

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days…

Dear Chronically Ill Partner, I know life isn’t always easy for you. You have grown up believing life dealt you a terrible deck of cards. You’re no stranger to the feeling of suffering. At one point or another, you’ve even questioned the motives of the universe in…

Bleeding episodes, chronic pain, and the presence of inhibitors in children with hemophilia cause emotional stress for caregivers and increase their burden, according to an European study that recommended early access to support services. Caring for a child with hemophilia, particularly when coping with poor joint health, leads to emotional stress,…

A few years ago, “MacDonald the Younger,” his mom, and I went to his yearly checkup with the Hemophilia Treatment Center to review our road map (healthcare chart), report on activities, and make sure that he was taking the correct dose of product for his height and…