Talking with children about HD and your family’s history with HD is beneficial at any and all ages. Having initial, approachable conversations around Huntington’s Disease lets you and your family control the message and teach your child or children about this disease before they learn about it elsewhere from other people. Open, honest communication within the family about HD establishes trust and can help further the conversation in a friendly and positive way. Children have an incredible ability to deal with difficult situations, and being honest up front lessens the burden on you to have to tip toe around the truth.
Kids who know about HD and if a loved one is affected by this disease won’t need to be afraid of it. In fact, children who are familiar with HD and its symptoms can continue to show a person with HD affection and respect instead of pulling away from them out of confusion or fear.
But who should tell the kids?
You, and your partner (if available), can tell the kid(s) yourself so you can control the conversation in a comfortable setting. The next best option would be to have a close family member or friend start this conversation. The most important thing is to make sure the child feels comfortable with the person talking with them and this person is knowledgeable and has accurate information about Huntington’s Disease. If both these options are off the table, a professional healthcare provider can also help you talk to your child.
If you need help talking to your kids or your family about HD, please contact us. We also have copies of "Talking to Kids about Huntington's disease" by Dr. Bonnie Hennig-Trestman, contact HDYO, or check out HDSA's publications.