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Huntington’s Disease: more from Which School? for Special Needs… June 30, 2010

Posted by Alex, Managing Director in Special Educational Needs.

Many UK news outlets have been carrying stories over the last couple of days about new figures surrounding the devastating genetic disease, Huntington’s.

As this link to a Sky News story reveals, this inherited neurological condition was once thought to affect fewer than 6,000 people in the UK.

But new figures show 6,702 adults and children are suffering symptoms, which include problems with brain function and muscle movement.

In our Which School? for Special Needs 2010/11 guide, published earlier this year, we carried some very interesting editorial about HD and how it affects young people.

We have reproduced part of the article, kindly contributed by Helen Santini, Roald Dahl Care Adviser for Juvenile Huntington’s Disease, and Cath Stanley, Head of Care Services for the Huntington’s Disease Association, below…

Juvenile-onset Huntington’s disease (JHD)

Huntington’s disease usually affects adults, although in a small number of cases it can affect children and teenagers (juvenile-onset HD, or JHD). However, only about 5-10% of those with HD will develop symptoms before the age of 20. JHD is therefore a rare condition and this can make dealing with it an isolating experience for those affected, their families and also professionals involved in their care. When young people develop JHD, it is likely that their school or college will become one of the key groups involved in their care, and in supporting any siblings who may be at school.

The HDA family weekend, which is specifically aimed at young people with HD and their familes, is held at a disabled activity centre and provides a unique opportunity for families to meet other people in the same situation and learn more about the condition from each other. It also gives the children and young adults with JHD an opportunity to take part in a whole range of exciting activities that they wouldn’t otherwise be able to take part in, giving them a sense of achievement.

Young carers

It is important to remember that Huntington’s disease doesn’t just affect the person with the condition, particularly given the inherited nature of HD. When a parent has the condition, there is often a great impact on the children within the family and the school can have an important role in supporting them. Family roles may be affected and children may have to take on additional caring roles for their parent.

There may also be an increased burden on the unaffected spouse, impacting on a child’s home life. Children may face changing symptoms within a parent that they don’t always fully understand, as well as aspects of the hereditary nature of HD and their own risk. Some families may find it very difficult to know how and when to discuss these things with children.

Finally, there may be issues around repeated loss, as well as grief and bereavement, that schools may need to be aware of. It is particularly important for schools to be aware that HD is taught as part of the National Curriculum and that there may, at any time these lessons are being taught, be children within the class whose lives are affected by the condition.

In addition to providing support and advice, the HDA offers four annual summer camps throughout England and Wales for children from families affected by HD. For young adults aged from 18 years onwards, the HDA now also offers a conference, ‘Decisions, Discussions and Dilemmas’, which gives them an opportunity to explore areas such as testing, having children and caring, as well as a chance to meet other young people in the same situation. From this, a Huntington’s Disease Youth Association has recently been established, with a Yahoo group and Facebook page. There is a range of literature aimed at young people available on the HDA website.



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