Parents and Professionals

What is it like for youth who are affected by HD:

Young people affected by HD can face enormous challenges; these are some of the issues that can impact their daily lives:

1. Coping with a symptomatic parent's behavioural changes
2. Dealing with ongoing loss; this may be the eventual death of a parent, but can also be the continual loss associated with repetitive personality changes in their parent with HD.
3. Knowing that something is wrong with a parent, but not having been told (enough), or having been misinformed about HD.
4. Problems getting access to accurate and age appropriate information.
5. Living in a family where the illness is dealt with in mainly negative ways
6. Not being adequately parented (particularly where the symptomatic parent is also a lone parent, or where the other parent has health problems as well).
7. Family breakdown - many relationships (70%) break down under the strain brought about by the illness
8. Living 'at risk' of inheriting the disease which creates a significant psychological burden.
9. Having to make a decision about whether or not to get genetic testing done
10. Becoming a young care-giver which may in turn affect:
    1. School life/performance
    2. Free time to meet friends and do 'normal' kids things
    3. Many assume a level of responsibility far greater than their peers.
    4. Feeling very burdened by their caring role.
11. There is some evidence that attachment formation between a parent with Huntington's disease and their child may be impaired resulting in later emotional and mental health problems.
12. Feeling embarrassed and/or different from everyone else. It is very common to feel isolated; they feel as though no one understands what they are going through
13. Some experience considerable social isolation
14. Being stigmatized by neighbours or the wider community.
15. Some children may experience emotional neglect or physical abuse.
16. Having to explain to friends, teachers or other professional staff about the disease and how it affects people.
17. Some children live in a family where a brother or sister has Juvenile Huntington's disease.

Overall, research suggests that young people's experiences of growing up in a family with HD can be extremely variable. While some may cope well, others experience considerable problems and are put at a greater risk for later physical and/or emotional problems. It is very common for the child to continuously feel anxious, stressed, frustrated and to assume an enormous amount of guilt. As a parent or a professional, it is to your benefit as well as the child's, that you understand the disease fully and be ready to listen to what they are going through.

Parental Support

Due to the nature of HD, many families have secrets. Whether they hold off on telling their friends, their family, or their children, many families struggle with coming to terms with this disease. As a result, one of the roles of professionals is to aid parents in coming to terms with HD as well as finding the appropriate way of introducing their families to it.

Support for parents when telling children:

When, how much information, and whether or not to tell their children are all common questions. In general it is advised that you tell your children at the pace they can comprehend. It is important to tell the truth, especially if the young person is living in the same environment as the individual affected by HD. If children aren't getting the information they ask for they are likely to search elsewhere, and in the end may feel betrayed. Be open, tell the truth; but go slow.

Having prepared answers or role-playing can often be very helpful. All families are different, especially in the ways in which they deal with sensitive topics. Some jump right in and discuss it over dinner, while others plan the night a little more strategically. Overall, it is important for you to be forthcoming with your child. And if you feel as though you require help, please speak to a professional. Know that you aren't alone in this.