Some attitudes and beliefs important to transmit to children about HD are:
- Acceptance and respect for members of the family with HD.
- Optimism and hope. Extensive research is in progress and a treatment and hopefully a cure will be found.
- No one is at fault for HD; it is not a punishment.
- You never know who in the family will develop HD.
- Admit that HD is confusing and difficult to understand.
I recently asked two questions of the HD support group at the HDSA Center of Excellence at Emory University:
1. Should children be told about HD?
The answer was a unanimous YES. When discussion is avoided, parents convey that HD is something about which
there should be embarrassment and shame. The group felt that difficulties arise when this important information
Children need to hear about HD from their parent and not by accident or from someone else.
2. At what age should children be told?
There was agreement that children as young as three or four can begin hearing about HD and that by age eight are ready
for full, open discussion.
Other helpful resources to consult on this topic include The Cartoon Guide to Genetics by Larry Gonick and Mark
Wheelis, New York: Harper Perennial, 1991, and Walking the Tightrope, Randi Jones, Ph.D., New York, HDSA,