Thursday, 26 March 2015

8 topics young people with epilepsy want you to know about

Young people and Epilepsy is a DVD produced in partnership with Epilepsy Foundation Victoria which presents an insight into what it is like for seven young people living with epilepsy. Topics covered include:

1.     diagnosis
2.     symptoms and seizure 
3.     medication
4.     who do you tell 
5.     challenges 
6.     getting support 
7.     looking ahead 
8.     words of wisdom

The discussions help create awareness about health information regarding Epilepsy including the different types of epilepsy. One of the goals of the DVD is to create community awareness and understanding to reduce the impact on individual lives.

By listening to the personal accounts of the young people, viewers find out what it is like for them. Symptoms, medications and challenges vary yet these young people all work towards self-control and management of epilepsy in their lives. Some of the challenges faced surround education particularly regarding absence from school and missed work as well as life at school amongst peers and teachers. For one young person a challenge was distance travelled and access to appointments and services as well as the impact of this on his family.  Dealing with tiredness, moodiness, as well a range of side effects from medications affect how the students feel. Social issues are talked about and gaining support from family, friends, health professionals, teachers and counsellors is essential.

At a time of rapid development and change, the young people provided insight into what is of importance to them and how they live with epilepsy. They provide positive insights into how they have faced and overcome challenges. Some of the young people have been living with epilepsy for a number of years and spoke about how it has changed their lives in many ways and not in others. Personal characteristics such as self-confidence and self-control have been developed. For example, several young people talked about getting enough sleep to meet the challenges of studying in high school. A few spoke of not drinking alcohol and the importance of looking after their health.

There is a section at the end for teachers. The benefits of the DVD as a tool for great learning opportunities in the classroom are highlighted. Ideas about how to use the DVD are outlined, including as a themed approach, for focus groups, raising health awareness and as awareness on chronic illness. The personal approach adds rich material and provides a unique opportunity to view chronic illness in a positive way.

The DVD can be used for professional development of various staff members at school and support information regarding a child at school with a chronic illness.Teachers will benefit from having reliable information at hand, providing support and follow-up for students as well as looking out for students who may be vulnerable.

The young people in this video have bravely talked about Epilepsy. They have told us what Epilepsy is, how they live with it, the negative impacts of living with epilepsy on their sense of who they are, as well as how they have overcome challenges. Community awareness does much to encourage children, young people and families on their journey with epilepsy.

Need more information?

If you would like to view more about epilepsy the AWCH library holds another DVD, Epilepsy in childhood which includes personal accounts from 5 families. Adults and two children talk about their experiences. This DVD covers the impact of epilepsy on both the child and their family. 

A comprehensive book, Growing up with epilepsy: a practical guide for parents, looks at many aspects of epilepsy addressing challenges found at different stages of a child’s life. Under basic tools, find out about understanding epilepsy, challenges of living with epilepsy, epilepsy at the “dinner table” and epilepsy goes to school. Although written in an American context the author, Lynn Bennett Blackburn, pediatric neuropsychologist at St Louis Children’s hospital, has much to offer parents at different stages of their child’s journey.

For more school, student and teacher savvy information, head to Epilepsy Foundation of Victoria’s Smart Schools program.

Jillian Rattray
AWCH librarian
March 2015