Project Description

Seneca said that ‘It is not because things are difficult that we do not dare, it is because we do not dare that they are difficult.’ And that is exactly what we can say about living with epilepsy as well. For most people with epilepsy it isn’t their seizures that are the greatest challenge, but the fears, overprotection or discrimination within their family and community.

This manual is written for parents, guardians or any other adult who is closely involved in the upbringing of children and youth with epilepsy. When we speak of a ‘child’ we also refer to a youth or adult who is still the child of their parents.

The aim of this manual is to provide information for parents about how they can assist their child with epilepsy in living an active life and being independent while maintaining a close relationship. To help create this manual, Peter Nyette (living with epilepsy) interviewed youth with epilepsy and their parents and held meetings with them to record their personal experiences and
lessons learned. We also welcomed epilepsy ambassadors Bernice Mugambi (Kenya), Allan Okello (Kenya), Ria Grove Booysens (South Africa) and Zaytoon Hartley (South Africa) to share their personal account of how they were raised by their parents while having epilepsy. We thank them for their invaluable and lively input on this manual, as it helps to encourage others to feel free to share
their personal experiences.

We wish to thank Dr. Eddie Chengo (epileptologist, Ubuntu Afya), Marina Clarke and Karen Robinson (Epilepsy South Africa), and Dr. Pauline Samia (child neurologist, Aga Khan University Nairobi), Moses Waweru, Annie Arogo, Nelson Ondari and Epillose Musimbi (Youth on the Move), Paul Ngone as well as Kenny Kaburu (Graphic Designer), Taylor Krohn (editor), Cokky Freeke and Frank Wamelink for their feedback and advice on the content of this manual and invite our readers to share their experiences and tips so that we can continue to improve the content, as we continue to learn as a team of professionals in epilepsy care.

Download The Manual here