Talking to your children about Huntington's
Talking to kids about HD can difficult. The idea of upsetting children often stops parents talking about the disease at all. However, research tells us this is not helpful.
By not talking about HD, it means keeping secrets. And keeping secrets in a family can lead to the children losing trust and feeling powerless. Even worse, if we cover things up children can create their own explanations for “the family secret”. These imagined versions are often much more scary and upsetting than the reality.
A Guide for Parents, Carers and other Important People
We appreciate every family is different- and every child too. The information in this resource pack is not a set of instructions, it is a general guide to be used as and when you need.
We know talking about Huntington's Disease is really difficult. Due to the fact that it's 'passed down' in families - and affects our loved ones - It's easy to understand why talking about HD can be very stressful and painful. These emotions can overwhelm families and stop people from talking.
We know this because parents and carers in our community tell us what happens. It's why the younger ones don't get a chance to learn about the disease.
Huntington’s WA has put together a resource pack to help parents talk to their children about HD. Follow the links below to the appropriate age group for advice on how and what to discuss with your children.
Why it's better to talk sooner, rather than later.
We now know that an inherited disease is nobody's fault. Yet, for many people with a genetic illness, they can still feel shame and the perceptions of stigma persist.
There's ways to reduce and keep these emotions in check. Talking about Huntington's with others can help us 'process' the emotions and reactions with experience. By learning and understanding that others have similar thoughts and feelings, we gain a sense that we're not so 'different' and find it easier to accept our feelings and the best ways to work through them.