Harm reduction strategies for teens with hemophilia
Let's give our children the tools and information they need to stay safe
The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?”
That question hit me. As parents ourselves, we know how tempting it is to imagine that simply saying “no” to risky behaviors will be enough to keep our kids safe. But older children and teens are naturally curious. They want to belong, and they’ll experiment — sometimes behind our backs, no matter how much we warn them.
The truth is, prohibition alone doesn’t work. What can work is teaching them how to navigate their choices as safely as possible, especially when living with a condition like hemophilia.
Why harm reduction matters
Teenagers with hemophilia face the same social pressures as their peers, but the consequences of a bad decision can be more severe. A night of drinking, a spontaneous piercing, or unprotected sex carries additional risks for them. Ignoring that reality doesn’t protect them — it leaves them unprepared.
That’s where harm reduction comes in. It’s not about condoning risky behavior. It’s about acknowledging that teens will push boundaries and giving them tools to stay safe while they’re learning about the world.
What our kids need to hear as they grow up
If Jared were to give that seminar, here’s what I imagine he’d say:
Tattoos and piercings: Self-expression matters, and for many teens, that means tattoos or piercings. Between the two, tattoos are often the safer choice for people with bleeding disorders. Tattoo needles only reach the upper layers of skin. Piercings, on the other hand, go straight through tissue, leaving a larger wound that bleeds longer and heals slower. They’re also more prone to infection.
If you must get either, plan your infusions in advance so your factor levels are stable, and only choose a studio with strict hygiene practices. A little preparation can make the difference between a meaningful experience and a medical emergency.
Alcohol use: If you’re going to drink, do it with people you trust — the kind who won’t pressure you and who’ll look out for you if something happens. Avoid activities that raise your injury risk when drinking: no driving cars or motorcycles, no running down stairs, no dashing across busy streets. Alcohol dulls your awareness, but hemophilia doesn’t take a night off.
And if you also live with epilepsy, like Jared does, it’s even more important to be cautious. In fact, the safest option is not to drink at all. If you do, keep it very sparing, know how alcohol interacts with your medications, and don’t make it a regular habit. The risks simply stack higher when two conditions are involved.
Safe sex: Sex and intimacy are topics that many teens will eventually explore — sometimes sooner than their parents expect. For teens with hemophilia, there are extra considerations. Intimacy can sometimes trigger bleeding — bruises, soft tissue bleeds, or even joint injuries. On top of that, unprotected sex raises the risk of infections, which can be more complicated for someone with a bleeding disorder.
That’s why safe sex is nonnegotiable. Use protection every time, and don’t be embarrassed to carry condoms. Beyond that, clear communication with your partner is essential. If certain positions are safer and less bleed-prone for you, say so openly — respecting your body and your limits is part of respecting the relationship. Planning around your treatment schedule (such as infusing before more physically demanding activity) also helps lower risks.
Parenting with open eyes
As parents, Jared and I know we can’t shield our child from every danger. What we can do is prepare her for reality. The same goes for teens in the hemophilia community.
Harm reduction isn’t about lowering our standards for them. It’s about raising their awareness so they can live full, independent lives. Our kids deserve to know reality, even when it makes us squirm. And if it means Jared standing in front of a group of teenagers, sharing what he’s learned the hard way, then maybe that’s the most loving thing we can do.
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.
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