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,…
Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald
When my oldest son was diagnosed with severe hemophilia at birth, I found myself catapulted into a world I never knew existed. I became part of the bleeding disorder community, like it or not. I slowly began to realize that this community was filled with passionate, well-educated people who knew…
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…
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…
Recent Posts
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- Guest Voice: My son’s journey with severe hemophilia
- Listening to each other’s symphonies in the bleeding disorders community
- More than half with hemophilia had gaps in prescribed factor treatment
- Understanding what being a parent with a disability means to our daughter
