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

question, second opinion, bullies, pain, emergency fund, life lessons, back to school, joy, bullied, letting go, pain, mom, bike ride, selfish, bleed

Cazandra is a pastor, author, columnist, motivational speaker, advocate, and encourager. She writes about the journey of raising two sons with severe hemophilia A with inhibitors. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her husband, Rev. Dr. Joe MacDonald, and youngest son, Caeleb (14) in Belen, New Mexico. She also has an adult son, Julian (24). Her book, “Dear Hemophilia: Finding Hope Through Chronic Illness,” is available on Amazon. You may follow her writings and view her TEDxABQ talk at www.cazandracmacdonald.com.

PE and 504s: A New Year is Beginning

When my oldest son, Julian, started elementary school in 2001, I was encouraged to proceed with a 504 plan for his protection. Section 504 refers to the Rehabilitation Act of 1973 that guarantees the needs of students with disabilities are met in school. I was surprised when I…

Finding Joy and Giving Thanks

When you live with a bleeding disorder, life can sometimes seem to be nothing but chaos. Just as one bleed seems to heal, another one begins. You start to infuse a factor at closer intervals, and before you know it, you are setting your alarm for factor dosing…

Knowledge is Power

Whenever I hear the phrase, “Knowledge is power, ” I think back to the animated children’s television show Schoolhouse Rock. I loved how fun, catchy songs taught kids how bills are passed, the preamble to the Constitution, and my favorite tune, Conjunction Junction. Every episode started with an intro stating,…

Honorarium Offered: A Chance to Spread the Word

In the bleeding disorder world, there are often opportunities to earn a few extra dollars. Research companies, pharmaceutical companies, and reporters will often reach out to members of the community to learn more about the disorder for their research. “Honorarium Offered” is a subject line in an email that will…

Advocating in Changing Times

When you live with a bleeding disorder, there are many things that are out of your control. When the next bleed will happen, how long a hospital stay will last, what the results of the blood work will tell you, and how much you will pay per unit…

The Change of Seasons Can be a Blessing

When you live with a bleeding disorder there are both good seasons and bad seasons. The good seasons are filled with scheduled prophy infusions, no bleeds, no missed days from school, and no calls from the school clinic. It just doesn’t get better. The bad seasons are when hemophilia…