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

Our world is changing. Shelves are partially stocked, hugging friends is discouraged, church services are online, and we study and work remotely. We crave connection. Things will improve eventually, but that seems a lifetime away. Finding routines and things in our lives that are “normal” is not always easy,…

As an introvert, coronavirus isolation is not problematic for me. I have plenty of projects to keep me busy. My graduate schoolwork is online, and the normalcy of school has been nice during these uncertain times. I hear about people who have a hard time in isolation, and honestly, I don’t…

Fear. Millions of people are living with insane amounts of fear due to the outbreak of the COVID-19 virus. This includes fear that the food supply will be limited, fear of catching the virus, and fear of lost income. There is a lot for our world to fear. But…

It is hard for some of the people in my community to understand why my son Caeleb struggles when he walks. Many see him as a normal 14-year-old boy who towers over me and is as goofy as the next kid. But they didn’t see him when he needed…

My 14-year-old son Caeleb is having trouble walking. Some days are better than others, but the bad days are filled with crazy pain. His right knee and ankle have sustained tremendous damage over the years from the joint bleeds that are a complication of hemophilia. His chronic…

It seems as if there is a day for everything: there’s National Wear Red Day, Boss’s Day, Rare Disease Day, Love Your Pet Day, and even National Margarita Day. And months are also observed for causes such as Blood Donor Month, Breast Cancer Awareness Month, and National Yoga Month. From…

Hemophilia has been a gift. Let me explain. I know some people will struggle to understand my viewpoint. I realize that they have suffered great physical and emotional pain because of this bleeding disorder. Some have lost relationships, jobs, and mobility, and have a reduced quality of life. I get…

Change is inevitable — like it or not, it’s a part of life. The seasons change and bring a crispness to the air or warmth after the bitter winter cold. Jobs change and we are given new responsibilities and challenges. Change happens throughout our lives, and we must move forward…

It was a beautiful Sunday afternoon and I encouraged my son Caeleb to take our dog, Betty, for a walk. He gathered the necessities of a 14-year-old — headphones and music — and put Betty on her leash and off they went. Encouraging my son to be active is difficult.

I’ve been living with chronic pain for several years. When I’m asked whether I had an accident or trauma to my neck and back, my answer is no. But I think hemophilia indirectly triggered my pain. Years ago, when my youngest son, Caeleb, was in a wheelchair, I think…