Sarah Gillett, Managing Director of Neurology Academy, has become the latest ambassador for the Voice for Epilepsy, a small charity focussed on advocating for people with epilepsy and raising awareness of the daily impact it can have on those living with it.
Begun by Kasam Parkar, who lives with epilepsy himself, the Voice for Epilepsy seeks to raise awareness of epilepsy, building a community of shared experiences and giving individuals a voice to connect and feel supported.
Kasam shared the roots of the Voice for Epilepsy by explaining, 'I had done a lot of fundraising for various other epilepsy charities in the past, but I felt that there wasn't enough awareness of epilepsy in people's day to day lives. The other charities are doing a brilliant job, but I wanted to do something different, to think outside the box.'
His vision is to improve the general public's understanding of epilepsy to overcome the misconceptions, even stigma, associated with it.
'It's not just how epilepsy affects people's daily lives. There can be cultural stigma - I experienced this myself. There are problems with bullying in school, with misunderstanding in the workplace, with societal challenges.'
The Voice for Epilepsy offers a space for people to share their personal stories, their experiences with epilepsy either for themselves or loved ones.
Kasam wants to open up people's understanding of what living with epilepsy can mean. This includes the different ways that seizures can affect people, the impact epilepsy can have on choices such as recreation, driving, family planning and employment, as well as repercussions for other areas of health.
'Epilepsy can lead to head injuries', he explains, which then affects people in other ways, perhaps their concentration, memory, or learning styles. Improving awareness, understanding, and giving people a voice to share their stories is so important.'
Living with epilepsy for many years, Kasam feels he brings that essential level of experience and expertise to his charity - and he is now seeking other expertise through ambassadors to help expand the charity's reach and further its vision. 'I'm looking to gather other expertise to the charity', he explains, 'to bring in people with different understandings, like research and education.'
With her experience in healthcare education, Sarah brings a different expertise to the Voice of Epilepsy. In explaining her reasons for accepting the role of ambassador, she said:
'Often the reality of epilepsy isn't understood. I want to help medics to become more compassionate - to help them see the person behind the diagnosis, the life behind the treatment.
Watching a friend have a seizure whilst driving - because he hadn't told any of us about his epilepsy - was terrifying. It showed me his reality of living with epilepsy. I have friends whose children have had brain surgery to help them live better with their epilepsy - it's not something we often think about.
Epilepsy can look so different for each person, but always, it affects their lives in a multitude of ways. Supporting healthcare professionals to bring compassion to their medical expertise and to deepen their understanding can make a huge difference to the services and support they provide, and to the way people with epilepsy experience healthcare.'
Neurology Academy is an innovative educational provider for healthcare professionals including consultants, specialist nurses, pharmacists, therapists and other allied health professionals. Our courses are developed by practicing specialists who combine their experience and expertise into case-based learning designed to create specialists in their field with confidence in effecting change.
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