Parents are rebuffing ideas that shrink a child’s life with hemophilia

I recently spent an afternoon with a group of parents raising young adults with hemophilia. They were part of a newer generation, people who grew up with a little more information, a little more community support, and slightly more medical options than what my husband, Jared, had access to.

I didn’t know how the conversation would go, but what I found left a quiet impression on me: These parents’ mindsets leaned toward possibility rather than fear.

They went about their day-to-day affairs with a grounded sense of optimism. If I had to describe it, I’d say it resembled the energy embodied in two popular athletic taglines: Adidas’ “Impossible is nothing” and “Just do it” by Nike. Not in a careless or carefree way, but in a practical, “we’ll learn, we’ll adapt, we’ll figure this out” way.

It made me think about how deeply a parent’s worldview shapes a young person’s sense of self — especially when that young person has hemophilia.

Recommended Reading

July 10, 2025 Columns by G Shellye Horowitz

Whoops, I forgot I’m living with hemophilia!

When caution becomes limitation

One mother’s story has stayed with me. She said a doctor told her years before that her son shouldn’t swim, run, or engage in most physical activities at all. The advice was delivered as a fact, as if the safest path was the narrowest one. But something about that didn’t sit right with her.

Instead of accepting it without question, she looked for a different doctor. Someone who knew that modern hemophilia care isn’t built solely on avoidance. That purposeful, guided movement can strengthen joints, build confidence, and support mental health. With better guidance and thoughtful treatment management, their son did learn to swim, work out, and stay active safely. Now 21, he participates in sports and drives a motorcycle to university daily.

Hearing that story reminded me of how often families are given restrictions shaped more by cautions they inherited than by updated knowledge. No parent wants to put their child at risk, especially when an unpredictable bleeding disorder like hemophilia is involved. But shutting down entire parts of their life can quietly teach a young person that their body is something to be feared.

Young people feel the tone that adults set. When that tone leans heavily toward limitation — avoid this, don’t try that, it’s safer if you sit this out — they may begin to shrink their lives, believing that to be safe, their world must be small.

No one intends that. But it happens.

Possibility makes room for growing up

The parents I met weren’t ignoring the realities of hemophilia. They’re well aware that factor remains scarce here in the Philippines. Many still rely on donations, personal networks, and charity organizations to secure treatment when bleeds happen. Scarcity forms the backdrop of nearly every decision, a fact they never minimize.

But instead of allowing scarcity to harden into fear, they approach life differently. They say, “How do we help our teens and young adults experience more of life while working within our limits?”

Their mindset is grounded and realistic. They talked about preparation, risk management, better-informed doctors, and adapting activities, instead of eliminating them. The parent who switched doctors didn’t do it to push boundaries unnecessarily. They did it to ensure their son’s future wasn’t shaped by outdated or ill-informed advice. Instead of relying on potentially limited information, they sought broader horizons and understanding.

This approach doesn’t remove risk, but it keeps risk in context. These parents’ teens and young adults still learn caution, but they also learn capability, bodily awareness, and self-trust. They get the chance to discover who they are, not just who they are expected to be.

Because these parents are clear-eyed, prepared, and willing to adjust, their kids get access to a fuller and happier life.

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 seek the advice of your physician or another 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. 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.