Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

My youngest son, Caeleb, became best friends with a girl named Taylor in sixth grade. Then, our family moved away to Texas, but returned to New Mexico two years later. Caeleb and Taylor now live an hour apart. Despite it all, they have remained close. It is remarkable for a…

March is Bleeding Disorders Awareness Month. It is a time when organizations such as the National Hemophilia Foundation and the Hemophilia Federation of America encourage the community to share their stories about life with a bleeding disorder. Many use social media to spread awareness by posting…

When my youngest son, Caeleb, was in elementary school, my main objective was to get him to school every day and not receive a phone call from the nurse. That may not sound like an accomplishment, as most people send their children to school regularly without issue, but complications…

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. Julian is extremely fortunate, because throughout his 24 years, hemophilia has not been the center of his life. His journey…

Most people probably have a handful of good stories to tell at parties, but someone with a rare medical condition never is at a loss for a new tale to tell. I recently led a workshop to help people in the bleeding disorders community craft their “elevator pitches,” which…

“Fine.” People have asked hundreds of times how my family and I were doing — particularly my youngest son, Caeleb, given his hemophilia — and I’ve replied with that single word. Caeleb is now 15, and his hemophilia is under control. But several of his younger years were spent…

There is no shame in raising the white flag when caregiving challenges become too taxing. The white flag, an international symbol used when someone seeks a truce or ceasefire, usually is the last recourse after a long list of possibilities has been exhausted. For a parent or caregiver, it…

Rap sessions are common at bleeding disorder conferences. During these group discussions, people come together to talk about similar interests, such as a new diagnosis in the family, inhibitors, or what it’s like being a hemo parent. Facilitators help the participants ask questions of one another and have…

My youngest son, Caeleb, recently turned 15. A celebration with his favorite dinner accompanied by homemade chocolate-peanut butter cheesecake ushered in another year filled with goals and dreams. After Caeleb blew out the candles, he looked up and said, “In three years I’ll be out of the…

What does an illness look like? Sometimes a bald head, pale skin, or a mobility device are outward signs that someone has an illness. People would never know my sons have hemophilia by looking at them today. My oldest son, Julian, is 24. He lives on his own,…