I am Tanya Spensley, the Founder of Epilepsy Footprint, and was born in 1966. At eighteen months I was diagnosed with epilepsy after a recovery from both eye cancer (retinoblastoma) and chickenpox .
As a child at infant and junior school, it was difficult to understand why I was blacking out with regular absence seizures let alone explain it to friends and teachers. Although I knew I was getting regular dizzy spells, I didn’t realise at a young age that I had a brain condition called epilepsy which was making me lose consciousness. At school my epilepsy presented me with learning difficulties resulting in school years and exams having to be repeated. But I was always determined to succeed and not let this condition hold me back.
So in my early adulthood, when I also developed tonic clonic seizures, I decided to go out and learn more about epilepsy and how other people were handling the condition.
In 1983 I joined my local Epilepsy Action and Epilepsy Society groups and got more involved with learning about many other people’s handling of epileptic seizures in everyday life. Employer and public attitudes towards epilepsy appeared to be the most common problem arising between members.
In 1992 I was transferred to the National Hospital for Neurology and Neurosurgery (NHNN) because other doctors had been unsuccessful in finding an appropriate treatment to control my own seizures. The NHNN began testing me via an Electroencephalogram (EEG), Magnetic Resonance Imaging (MRI), video telemetry, memory tests, neuropsychological tests and new medications. As a result a decision was made that I could be recommended for surgery on the left temporal lobe in September 1996. This was both an exciting and scary time but was well worth proceeding with. I didn’t suffer any permanent side effects from the surgery and have had my seizures controlled ever since.
Since this operation I decided to expand my horizons even more by becoming a registered volunteer for both epilepsy organisations. This has involved:
I also began attending international epilepsy congresses in 1999 and have since become elected as:
This work has lead to many presentations and papers being given with regards to Epilepsy Awareness, Epilepsy in The Gambia and the treatment gap between nations and negotiations with political leaders.
The vision of Epilepsy Footprint is to keep improving people’s understanding and handling of epilepsy in everyday life both in the UK and abroad.
In many developing countries there is a negative attitude associating epilepsy with the devil and disease resulting in many people being disowned by their families, schools and employers. So going out and talking to people about the various aspects of epilepsy has been shown to bring people together rather than remain isolated and improve people’s confidence everywhere in handling seizures when witnessed.
All this is achieved by providing training and information to those who wish to understand and learn more about epilepsy.
This aim is ensured by giving various presentations regarding epilepsy in everyday life via: