Why Hemophilia Parents Shouldn’t Be Afraid of the Truth
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Why Hemophilia Parents Shouldn’t Be Afraid of the Truth

My 4-year-old son went through a phase a few years ago where he had to clarify everything he said. “Momma, that car was blue. It wasn’t green. It was blue.” “Momma, this is a circle. It’s not a square. It’s a circle.” Like any momma, I thought it was cute at first, but after a while, it proved to be a challenge. “Momma, I saw a duck, not a bird, a duck.” As I caught myself trying to explain to my child that a duck is, in fact, a bird, I quickly realized that there is no reasoning with a preschool know-it-all!

And if I thought identifying shapes and animals were points of childlike contention, I can only imagine how difficult it may be to explain hemophilia to a young child.That’s why this video seen in Hemophilia News Today is a must-see.
Children who have been given an understanding of hemophilia may feel a sense of belonging after realizing that there are lots of children out there like them.

Rather than feeling stigmatized, they may experience a sense of empowerment in having a community of children they may find at school, camp, or other treatment settings. It can offer opportunities for forging connections with others who share similar challenges.

Some children may see the word hemophilia as a term describing what is “wrong with them.”
We have seen children who were exposed to the word hemophilia when they were diagnosed but avoid saying it, because of the sense of impairment it represents.

In this regard, it can feel like an albatross. They may see hemophilia as a challenge that holds them back from reaching their potential.

This doesn’t need to be the case. Children can use their hemophilia label as a potential cornerstone for building self‐advocacy skills, and it can help facilitate a sense of control in their lives. For some, while hemophilia may be seen as a bleeding disorder, it may also be seen as a fundamental part of their self-concept.

It’s an issue that needs to be dealt with carefully and sensitively to maximize the child’s adjustment to what lies ahead.

Hemophilia News Today presents some guidelines to help parents make the best decision for their child, so click here to learn more!

If you are a hemophilia parent or caregiver, what tips can you share about explaining a diagnosis? Share your thoughts and your hopes with the Patient Worthy community!