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

  I had the amazing privilege of speaking to the women of the Gateway and Midwest hemophilia associations at their annual retreat for women with bleeding disorders. There is just something about folks in the Midwest. They are kindhearted, compassionate, and tons of fun. Every time I…

I am still waiting to hear from our hemophilia treatment center about whether our insurance will cover Hemlibra (emicizumab-kxwh) for Caeleb. Honestly, I’ve put it out of my mind for a bit because I know it is not a “done deal” until I have the product in my…

Last week, my husband and I took our mighty warrior Caeleb to the hemophilia treatment center so that we could touch base with his hematologist. Caeleb recently had labs drawn, and it was time to sit for a meeting about his treatment. We were called to the back to…

The Olympic medal ceremonies are some of my favorite moments as a spectator. Seeing the athletes with their hands over their hearts as the flag is raised and the national anthem is played is a beautiful sight. With their medals hanging proudly around their necks, one can see…

The favorite Winter Olympics sport in my home is figure skating. My husband can tell you who won which medal in any Olympic games, and when he hears a piece of music that was used by a skater, he can not only tell you the name of the…

There are some moments in my life while raising two sons with severe hemophilia that I have thought, “Wow! You, Cazandra, have just won the gold medal in the Hemo Mama Bear Olympics!” And there are other times I failed so miserably that I would not have even…

I’m not a football fan, but I do watch the Super Bowl to see the halftime show and the commercials. This year’s game was a good one. I will admit the game riveted me toward the end. When the Philadelphia Eagles kicked their final field goal, stretching their lead…

Second in a series. Read part one here. I have been on medication for my clinical depression for over 25 years. There is no other option. Even throughout my second pregnancy, I took medication under my psychiatrist’s supervision. I’ve never been ashamed to admit my need for medication,…

First in a two-part series. I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply…

When you have a bleeding disorder, you are part of a community that becomes family. You never completely leave them, and they never leave you. The disorder binds you for a lifetime. When your bleeding disorder wreaks havoc, you tend to reach out to your bleeding disorder family…