Talking With Kids About HD

When children are not given a reason for what they see happening in their family, or an avenue to discuss it, they will create explanations on their own or seek out information elsewhere. They may think that the changes they see in the family are their fault or blame the affected person for behaviors caused by the disease. They may go online and become exposed to information that is neither factual nor applicable for their situation. Giving your child information about HD — the right amount at the right age — will give him or her tools to deal with the changes in the family while helping him or her to feel secure and live positively. Although you may not feel that you know enough about HD to talk about it, you have the child’s trust and that is what qualifies you to be the one to start the conversation.
Know that you are not alone in your effort. There are many people ready to offer you support, including the physicians and professionals at HDSA Centers of Excellence, the social worker available through your local HDSA Chapter, members of an HDSA Support Group, or HD knowledgeable mental health professionals. Talking with children about HD should be thought of as a series of conversations over the course of many years. These conversations will develop as the child matures and the affected family member’s symptoms progress.

The guide, Talking With Kids About HD will help you find the right words to start the conversation about HD early and keep the lines of communication open. The conversation will be ongoing. Your child’s needs will evolve over time and so will his or her thoughts, questions, and fears about HD. It is up to you to keep the conversation going as your child matures.
Click here to download a copy of Talking With Kids About HD.

Empower Kids!

HDSA’s National Youth Alliance (NYA) is a nation-wide youth-run organization for youngpeople affected by HD. The NYA motivates youth to get involved in their local HDSA Chapters, Affiliates, and Support Groups in efforts through education, fundraising, advocacy and awareness for Huntington’s disease. The NYA is made up of young people ages 9 to 29 that are impacted by Huntington’s. The NYA is dedicated to the vision of being the last generation with Huntington’s disease.