Advocacy doesn’t always mean protests or politics; sometimes it begins with a parent learning everything they can to protect their child. One mother shares how speaking up for her sons with hemophilia helped teach them to one day speak for themselves.
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Advocating for a child with hemophilia involves educating others, asking questions, and balancing safety with independence. Hemophilia treatment centers (HTCs) provide comprehensive care, including personalized plans and education, and are crucial for managing the condition. While hemophilia may not always be outwardly visible, it can cause significant pain and joint damage.
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Parenting a child with hemophilia often means learning how to balance protection with independence — knowing you can’t prevent every bleed, but still wanting them to grow, explore, and feel like themselves.
Cazandra Campos-MacDonald, whose son lives with hemophilia, shares her experiences with hemophilia treatment centers and offers advice on how to find the right center to suit your needs.
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What Does Hemophilia Look Like?
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,…
More than 21 years ago, when my first child was born and diagnosed with severe hemophilia A, he was very fortunate to have first-generation clotting factors available. These were concentrates stabilized with albumin that were very safe. When the factor was reconstituted with sterile water, a seemingly…
Most people will tell you that their children are opposites. One is outgoing, the other would rather be left alone. One will talk until your head hurts, the other will utter only a few words when prompted. Their personalities are different, yet they have the same biological parents. I see…
My Facebook friends fall into a few categories: biological family, colleagues and friends from my music and teaching days, high school and college friends and teachers, and my “bleedin’ folk” family. Raising two sons with severe hemophilia is a blessing because of the people in my life (I work…
With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game,…
Caeleb is super excited about starting the seventh grade this week. He loves the new town we are living in and is hopeful for the school year. He wants to play basketball. Now, most people would say that is a normal thing for a 12-year-old boy to want…
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…