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New hope for understanding and managing epilepsy

Maria Lowe with a copy of the book at the print shop
5 HOPES

A new book has been recently published to provide practical help and hope for those with the often misunderstood condition of epilepsy.

Epilepsy affects at least 50,000 New Zealanders. Of these, around 30% have no seizure control, a condition referred to as medication-resistant epilepsy.

The book was written for a wide audience, primarily for people living directly with epilepsy, and others such as family members, caregivers, flatmates, workmates, and employers interested in knowing more about the disease and its impacts and management.

A special feature of the book is the inclusion of twelve first-hand accounts by people living with epilepsy about their experiences, challenges, and accomplishments, their overriding aim being to have their voices heard.

The regional epilepsy provider in the Waikato region, Epilepsy Waikato Charitable Trust (EWCT), released the book in September 2021 with the title, Understanding and Managing Epilepsy – an Introductory Guide.

Written by Maria Lowe, the epilepsy advisor for EWCT, and David Lowe, chair of EWCT’s Trust Board, it is the first general book on epilepsy to be published in New Zealand in more than 30 years.

On 30 September 2021, 100 copies of the book were donated to the Neurology Department of Waikato Hospital.

Maria Lowe (left) and David Lowe delivering 100 free copies to Waikato Hospital

“These books will be very useful for hospital clients with epilepsy, especially those newly diagnosed, and family members, who will be keen to learn more about the condition and what sort of help is available in the community”, said Maria.

We have gathered together a lot of information and put it between the covers so that it is all at the fingertips rather than being scattered and hard to access or understand.”

 

EWCT is also giving free copies to every library in the Waikato region.

The book covers at an introductory level the complex nature of epilepsy including the many different types of seizures, treatment options (including the ketogenic diet, a proven, effective treatment for children and adults with medication-resistant epilepsy), potentially life-long impacts, and how to live safely with the condition.

Patron of EWCT, the Hon. Tim Macindoe, wrote in the book’s foreword, “Publications such as this are exceptionally valuable to all members of the community, especially those who may have had no previous experience of epilepsy or who are unaware of how many different types of epilepsy there are.

In addition, the book shows that epilepsy can have an ongoing impact on the lives of those who have epilepsy and their families.”

EWCT is a small regional epilepsy provider based in Hamilton and serving primarily the Waikato region (of the Waikato DHB). The Trust also supports people beyond the Waikato, e.g. in Tauranga, Auckland and Wellington, and overseas through Zoom etc. EWCT is non-government funded and entirely reliant on funders and donations.

Previously, EWCT has published two children’s books, “Ben’s Buddies” and “Ariana and Jack”. Both in English and te reo Māori, hundreds of copies of these picture books have been provided free to clients, schools, and others with an interest in epilepsy and its impacts.

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For more information:

EWCT website

EWCT Facebook 

5 HOPES

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