Talking to Your Teen About Huntington’s Disease Inheritance

Talking to your teen about Huntington’s disease (HD) means asking them to think about two hard things at once: what the disease may mean for a parent they love, and the possibility that they could one day develop it themselves. It’s understandable that many parents struggle with when and how to begin that conversation.

Waiting doesn’t necessarily protect them from thinking about it, though. “By the time kids become teenagers, they usually have a sense of what is happening at home or within the larger family even if they haven’t been told much,” says Stacey A. Krueger, LCSW, the clinical program manager at the HDSA Center of Excellence at WashU Medicine in St. Louis. Teens may have noticed changes in a parent or relative, overheard conversations, or looked up information themselves, Krueger says.

The conversation doesn’t have to answer every question at once. “The goal of the first conversation should be thought of as opening the door, rather than ‘the big talk,’” says Phaleen Hanson, LICSW, a social worker at the UW Medicine Adult Genetics Clinic and HDSA Center of Excellence at the University of Washington in Seattle. The idea is to give your teen honest information while making it clear they can come back with questions as they’re ready.

Ideally, Huntington’s disease has already been part of age-appropriate family conversations before adolescence. “When families normalize these conversations at an early age, it prevents the ‘big’ talk later on,” Krueger says. If that hasn’t happened in your family, you can still start with what your teen needs to know now rather than trying to cover everything at once.

Before the conversation, Hanson recommends working through your own feelings about Huntington’s with a therapist, support group, or trusted friend. “We want to avoid adding our own fears and anxieties to the teens’ in this process,” she says.

It also helps to know the basics of HD and where to find reliable information, but you don’t need to be an expert, says Hanson.

“It’s completely fine to say, ‘I don’t know, but we can find the answer,’” she says. This is actually more helpful than you would think; it can be reassuring that answers can be found even in uncertainty, says Hanson.

Who leads the conversation will depend on what feels right for your family.

“If I had to generalize, I would say the unaffected parent — or both parents — might be best. The teen might have questions that they are afraid to ask in front of their parent with HD,” says Krueger.

Both Hanson and Krueger agree there’s no hard-and-fast rule about this. One parent may be better suited to take the lead on a particular topic, and that can change over time, says Hanson.

When it’s time to explain inheritance, Krueger recommends being calm, factual, and honest.

“I will often tell them that I am going to start with practical, factual stuff, and while that has emotions behind it, I won’t hide anything or lie to them. If I am calm and open and give them space to be emotional — now or later — the teen will likely do okay,” Krueger says.

The main concepts your teen needs to understand are:

• Huntington’s disease is caused by a change in the HTT gene, which provides instructions for making a protein called huntingtin.
• Everyone has two copies of the HTT gene, one inherited from each parent.
• A parent with HD typically has one expanded copy and one typical copy of the gene.
• Each child has a 50 percent chance of inheriting the expanded copy. That chance is separate for every child, so what one sibling inherits doesn’t change another sibling’s risk.

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Teens can understand these concepts, Krueger says, and many have already learned about DNA and genetics in school. You can use what they know as a starting point and then let their questions determine how much further you go.

“If a child is capable of asking the question, they are usually capable of an honest answer, especially if that answer is limited to the question posed,” she says.

Teens’ reactions can vary tremendously, obviously because of personal differences, but also because of how prepared the teen was for this in their younger years, says Krueger.

Hanson agrees that there’s no way to predict how your teen will respond. Ideally, the teen is able to leave the discussion feeling supported, feeling they can follow up with more questions, and having some tools to reach out for more when they are ready or need more, she says.

“To do this, the teen should feel like they have control of the conversation and not feel like a hostage in it. Parents should try to avoid the trap of continuing to talk to fill the quiet,” says Hanson.

If your teen asks you directly, “Does this mean I’m going to get Huntington’s disease?” Krueger recommends being direct.

“The most honest answer is, ‘We do not know, and there is a 50 percent chance you won’t; if you do, we are hopeful for effective treatments in your lifetime,’” she says.

That answer doesn’t eliminate the uncertainty, but parents don’t need to try to talk teens out of whatever they feel about it. Hanson says the goal is for them to know their feelings are valid and that they have people to turn to when they want support.

Krueger and Hanson recommend paying attention to significant changes in a teen’s behavior or daily life that could indicate they need additional help, such as:

• Withdrawing or becoming more isolated
• A noticeable change in school performance or friend groups
• Substance use or other major behavior changes
• Changes in eating, usual activities, or self-care

“Some kids become ‘too adult’ and become really helpful at home. This might be okay, but sometimes it is a hidden sign of a kid that needs more support to be a kid,” says Krueger.

If you notice concerning changes, Hanson recommends reaching out rather than ignoring them. Depending on what your teen needs, support might come from an HD social worker, therapist, school counselor, or family counselor.

Kids should be allowed to make the decision for themselves when they are of the legal age to do so, says Krueger.

An older teen doesn’t have to wait until they’re ready for testing to learn more about it; they can still meet with a genetic counselor or HD social worker, Krueger says.

There are practical issues to think through as well. Federal law protects genetic information from being used for discrimination in health insurance and employment, but those federal protections don’t extend to life, disability, or long-term care insurance.

Questions about Huntington’s disease are likely to change as your teen gets older, notices changes in an affected parent, or starts thinking differently about their own future. Keep communication open, and let them decide how in-depth the conversation needs to be, says Hanson.

“If they feel like every time they ask a question it becomes a long, heavy discussion, they may be more reluctant to ask questions,” she says.

Parents can still look for natural openings to revisit the subject. An appointment for the parent with HD, an update from the medical team, or news about Huntington’s research can provide a reason to check in without making the teen feel singled out, says Krueger.

You can also tell your teen you’re going to occasionally check in with them about how they’re doing around the topic, and so it becomes normal and expected, she says.