By Barb Horner, Nova Scotia and P.E.I. Resource Centre Director
It’s never easy discovering that Huntington disease (HD) runs in your family, testing positive for the HD gene or getting diagnosed with the disease. It’s even harder when you have children. How do you break that news to them?
Families shouldn’t feel alone when they are deciding how and when to tell their children. One of the ways I can help is by giving parents resources to make that conversation easier or even sitting down with the children myself to start that discussion.
Talking about these things is very emotional, but if we don’t discuss them, kids are going to be looking for answers online. So, we encourage parents to direct their kids to the right information and to stress the positives: there’s a lot of great research happening and there are clinical trials underway to test potential treatments.
One of the things to keep in mind is that it’s okay to share a little bit of information at a time. Children will come back with questions when they’re ready, so long as they know you’re willing to answer them. (You can find fact sheets about speaking with children here.)
The other thing is that what you tell a 12-year-old is going to be completely different from what you tell a five-year-old. Over the last decade, the Huntington Society of Canada has created some great, age-appropriate resources.
Finally, make sure your children know they’re not alone. The Society has some excellent programs for youth, like our Youth Mentorship Program that matches them with an older peer and the Young People Affected by Huntington Disease (YPAHD) Chapter, which is a great way to get involved in the national organization.
For me, it’s really gratifying to empower families and help the next generation feel more in charge of their lives. I love knowing that I can make a difference.