Yulia Tsvetkova and her mother who is diagnosed with HD

Due to HD´s impact on relatives/friends, HD is also a family disease. As the disease progresses, the family role of the patient gradually changes. The partner/spouse often assumes more and more tasks including housekeeping, decision-making and parenting duties because of the partners inability to fulfil their previous roles.  The partner/spouse usually assume the role as primary care giver as well.

Children and adolescents must face living with a mother or father who is ill and whose behaviour may be erratic. They may even be asked to participate in the parent’s care. For parents, telling children about HD can pose difficult questions. Should a child/children be told about HD? If so, at what age. When is a child old enough to cope with the idea of being at risk for HD?

There are no easy answers, particularly since children mature differently and each family situation is different. Generally, it is a good idea to be as open as possible without being alarmist, and to convey the facts bit by bit. This way, a child can develop a gradual awareness of HD rather than being suddenly overwhelmed by information.

For more information on how to break the news to children/adolescents´, please visit the Huntington Disease Youth Organization (HDYO), an organisation dedicated to helping young people and their parents to learn to live and cope with HD.