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.
Families who want help can also turn to an HD social worker, genetic counselor, or another professional with specific Huntington’s experience. Because HD is rare, Krueger recommends working with someone who understands the disease and the particular issues families face. The Huntington’s Disease Society of America (HDSA) can connect families with Centers of Excellence, social workers, support groups, and youth programs.
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