Epilepsy Warriors Foundation and Epilepsy Scotland

Lesslie Young, Chief Executive

 

With COVID-19 changing the way we live in so many ways we need to focus on the positives. Epilepsy Scotland has seen an increase in people participating in our services since we moved to virtual delivery. Some people are more comfortable taking part from the comfort of their own home and we have been able to reach people much further afield.

Last week, we used Zoom to meet with the Director of Malawi-based Epilepsy Warriors Foundation to discuss how Epilepsy Scotland can support them.

With over 3,000 people being prescribed anti-epileptic drugs (AED’s) in Blantyre according to Samuel Chigamba, Director of Epilepsy Warriors Foundation, and the Queen Elizabeth Central Hospital in Blantyre. The non-governmental organisation (NGO) was established by a group of volunteers in Blantyre, Malawi in 2018.

The Foundation runs an awareness programme across three school zones in and around Blantyre. With a group of approximately 30 volunteers they visit schools, raise awareness of the condition and educate pupils and teachers in first aid for seizures. Unfortunately, this year, due to COVID-19, the volunteers have only been able to visit eight schools in Blantyre

Recognising pupils with epilepsy may have challenges with education, the Foundation has established an “epilepsy club” with over 100 members who Samuel describes as “young advocates”.

The conversation highlights many challenges faced by someone with epilepsy, and many other conditions, are the same no matter where you live. However, there were some other differences and challenges identified during our call. The medication available in Malawi differs hugely from what is available to patients in Scotland, for example. Samuel was eager to tell us about an opportunity to bring Keppra to Malawi soon, a medication prescribed to thousands across our country for several years. He also informed us there was no access to rescue medication for those with difficult to manage epilepsy and seizure for an extended length of time or in clusters. This too is readily available here.

I was enormously impressed by the work, commitment and level of volunteering from Samuel and his colleagues at Epilepsy Warriors Foundation. So much so we are now making plans to support them in every way we can.

As I write this, a package with relevant information guides we have produced are on their way to Blantyre, Malawi. This includes our teachers’ guide, teenage guide, children’s books, safety guide and some seizure diaries too.

Furthermore, our Training Manager is in touch with Samuel to arrange training on our school’s awareness talks for their volunteers as well as our Managing Difficult Epilepsy course too, all conducted via Zoom!

We also hope to introduce our youth groups to the Epilepsy Warriors Foundation’s young advocates via Zoom, to let them discuss the challenges they face and recognise they are not as different or as isolated as they might think they are, whether in Malawi or Scotland.

We are pleased to be able to offer this kind of support to colleagues in Blantyre who, like us, are working every day to change the lives for the better of those with epilepsy. Perhaps without COVID-19 and our new way of working this would not have seemed possible a few months ago, and I look forward to seeing what else these new changes bring.

Stay safe.

Share this post: