From our voices to theirs: Teaching our sons with hemophilia to self-advocate

Long before our sons could advocate for themselves, my wife, Cazandra, and I spoke on their behalf.

At the beginning of every school year, we met with the principal, school nurse, social worker, faculty, and other staff members who would work with them. We explained concerns related to their hemophilia, answered questions, and provided basic treatment guidance. Our goal was not only to correct common misconceptions about bleeding disorders, but also to create a foundation our sons could one day build on with their own voices.

Each year, we began with the same message: “People with hemophilia do not bleed faster; they bleed longer.” We could feel a sense of relief spread through the room as we continued our explanation. Dispelling that common myth eased fears and opened the door to understanding.

From there, we discussed what to watch for, what our sons might say during a bleed, which activities were safe, and which were off-limits — lessons our sons would eventually learn to explain for themselves.

As each year unfolded, one concern would surface more than any other: What would happen if one of our sons experienced a bleed at school? We returned to our first lesson, reassuring faculty and staff that their blood would not suddenly gush out. We encouraged them to take a breath, apply a bandage, and call one of us if they felt nervous or uncertain. Above all, they needed to know that we trusted them with our children.

Recommended Reading

March 1, 2023 Columns by Cazandra Campos-MacDonald

Advocacy can be uncomfortable, but it’s necessary

Over time, those yearly meetings became more than opportunities to educate faculty and staff; they became a training ground where our sons could find their own voices. In middle and high school, we gradually handed them the reins and stepped back. We chimed in when needed, but our sons explained what the staff needed to know about living with hemophilia. Although my sons are 10 years apart, I was proud that both began with the message they’d heard us share about bleeding longer, not faster.

Julian, my oldest son, usually referred to the information sheet my wife had prepared for the faculty and staff. He covered the basics and added treatment details that even my wife and I didn’t know. He described what internal bleeding in a muscle or soft tissue felt like, how he cared for himself when a bleed occurred, and which activities could trigger an episode.

Caeleb, my youngest son, usually spoke off the top of his head. He wanted his teachers to understand what an internal joint bleed felt like and how it could affect his mobility. He told them, “When I have a bleed into my knee or ankle, it is like thousands of needles keep poking deep into my leg, and they don’t stop.” He also explained that repeated bleeding episodes could leave him unable to put weight on his right leg. When walking became too painful, he would need a wheelchair.

Now that our sons are adults, our role as advocates has changed once again. We still answer questions and offer suggestions when asked, but our voices no longer lead the conversation. Instead, we stand beside them as they take charge of their bleeding disorders. At times, we still want to step in and say, “It is best to do things this way,” but we know when to step back. The torch — and the responsibility to advocate for their own care — now belongs to them.

Both sons carried our first lesson with them, but more importantly, they made it their own and found the confidence to advocate for what they needed. Today, they order medical supplies, schedule annual appointments with their hematologists, and make decisions about their care. What began with our voices in a school meeting now continues through theirs. We have the privilege of watching them lead, and for that, we are truly grateful.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.