Advocating for your child with hemophilia

This is part of an advocacy series that honors Hemophilia Awareness Month. To read more in this series, published throughout the month of March, click here.

When I hear the word advocacy, I picture lobbyists, protesters, and community organizers. Many people think of lawmakers trying to create change. But advocacy is also about taking action to support a cause and standing up for others’ rights.

As the mother of two sons with severe hemophilia, I learned how to advocate for my sons. I may not be a politician or a clinician, but I do know my sons and their needs.

When they were young, I taught myself everything about hemophilia so that I could speak on their behalf. I often didn’t believe I had enough knowledge to represent them. Still, I relied on my gut instinct as my guide.

I also found it necessary to educate everyone who cared for my sons, from teachers and coaches to day care workers, nurses, and doctors.

Asking questions

The hemophilia treatment center (HTC) is a lifeline for families raising a child with hemophilia. At first, when you’re still learning about the disorder, talking to these professionals can feel intimidating.

But to effectively advocate for your child living with hemophilia, you need to ask questions. When you don’t understand something, ask for an explanation. The more you learn, the more confident you’ll become in asking questions and making suggestions.

This is especially important because people often believe that doctors are always right. But they are human too. Of course, they have extensive training and knowledge about the medical side of hemophilia. Yet, you and your child live with it every day.

So when it comes to your child, you are still the expert. Which is another reason you shouldn’t ever hesitate to ask questions.

For instance, if there is a new treatment on the market and the doctor hasn’t discussed it with you, ask if your child could be a candidate. If they say no, ask why not.

When you understand each other’s perspectives, care becomes more complete.

Educating others

The HTC can provide guidance on scheduling meetings with your child’s teachers and the school nurse. In addition to educating them about hemophilia and your child, you want to address any concerns the teachers and staff may have.

Let the school know that you are always available to answer any of their questions. And make it clear that you are depending on them to call you whenever they’re unsure about a possible bleed or if your child has a fall or bump.

Good communication helps everyone feel more confident and have a better understanding of hemophilia.

Teaching through advocacy

At first, as parents, we are the ones who advocate. We speak up, explain things, teach others, and protect our children. As they grow, our role starts to change.

Advocacy isn’t just about speaking for our children. It’s also about teaching them to speak up for themselves.

• When we ask questions, our children learn that it’s OK to ask questions too.
• When we share our concerns, our children see that their experiences are important.
• When we ask for clearer communication, our children learn how important it is to be heard.

Our goal isn’t to speak for our children forever. We want to empower them, helping them become confident and informed people who know their worth and aren’t afraid to ask for what they need.

As time goes on, our children will start to find their own voices. They will learn to explain their condition, share their needs, and take part in their care. And they will soon realize they can understand, manage, and represent their own health needs.

Advocacy starts with love that grows as we learn. And it comes full circle when our children find their voice and know how to use it on their own behalf and for their hemophilia.

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 seek the advice of your physician or other qualified health 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.