Of all the many local charities and good causes, I’ve had the pleasure of working with during my decade as Hamilton West’s MP, my closest and most extensive involvement has been with the fine folk who are now members of the Epilepsy Waikato Charitable Trust (EWCT).
The former Epilepsy Waikato branch was treated very badly by its national organisation and enlisted my help in what became a long and difficult battle for those who live with epilepsy in our region. We worked closely for a sustained period and I was honoured when they invited me to be their Patron when the Epilepsy Waikato Charitable Trust was set up to continue the work the previous branch had been doing.
Epilepsy is a complex and serious neurological condition affecting approximately 48,000 New Zealanders. Most people with epilepsy have good seizure control, and live good lives, but at least 35% of our epilepsy community will have no seizure control whatsoever with conventional medications and are considered to have drug-resistant epilepsy. For many, the impact of having this condition is profound. There is a ripple effect since epilepsy can affect every facet of a person’s life.
Maria Lowe is EWCT’s trained epilepsy advisor who supports and advises people living directly and indirectly with epilepsy within the Waikato District Health Board’s large area which stretches from Thames to Taumaranui. Her primary aim is to improve the quality of life for all and to provide holistic support, and she does so with admirable energy, commitment and expertise.
Maria has developed personalised epilepsy action plans, which have proven to be an essential tool in schools, residential homes and workplaces and take away the guesswork and fear that often surrounds a person’s seizures. Training seminars and awareness talks are given to any group wishing to receive more information.
Two children’s epilepsy books have been produced by the Trust and are given free to all children with epilepsy and also to schools and libraries. A new online epilepsy poster: Not all seizures look the same, is an interactive guide to how seizures can affect individuals. Since social connectedness is vital, EWCT also runs various social groups and recognises an ‘epilepsy hero’ at an annual mid-winter event.
EWCT is also petitioning Parliament to consider funding a number of trained ketogenic dieticians and a support programme at Waikato Hospital to help the 35% of people with drug-resistant epilepsy. It will be my privilege to present the petition on their behalf later this year. The ketogenic diets are proven, effective treatments in children and adults and their use would provide a vitally-needed third option to help control seizures for when medications fail and brain surgery cannot be considered. An alternative treatment option would provide hope for thousands of New Zealand citizens who are struggling day-to-day with their epilepsy and its impacts.
Many people with epilepsy want to be heard, and for there to be more awareness around this condition. There are more than 40 different seizure types and everyone with epilepsy will have their own seizure story and how it affects them.
November is Epilepsy Awareness month and many activities have been organised. EWCT has developed a postcard project that involves 30 people who are directly or indirectly affected by the condition and its impacts. Every day in November a different postcard will be shown on the EWCT Facebook and website (www.ewct.org.nz) expressing a snapshot of views and personal stories.
EWCT doesn’t receive government funding and is very grateful to its philanthropic funders, sponsors and donors for the support that they give financially. Donations can be made via the website, and if you require support or more information you are welcome to phone Maria Lowe 021 888 293, or email: email@example.com.