Page 60 - SEN115 - November/December 2021

Epilepsy
Living with epilepsy: stories
of children and their families
Rajvinder Singh Gill accounts of families and their children’s journey through the process of diagnosis and its aftermath.
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The diagnosis of epilepsy is part of a journey that an individual will make alongside their family. The epilepsy journey varies and can be challenging for families. For some, the diagnosis leads to relief and better management of epileptic episodes to the point that normal life resumes while for others it is a difficult process of medical reviews and appointments often resulting in temporary relief without a long-term resolution. Parents often find that their child’s presentation varies day to day and at times there is the accompanying loss of cognition and emotional wellbeing.
Epilepsy is often a hidden condition even though it’s prevalence should make it more visible. In terms of numbers, around 87 individuals get diagnosed with epilepsy in the UK every day. The picture is complex. It presents differently in individuals and there are around forty types of seizures to account for. Perhaps most of us equate a seizure with the body writhing in pain from the loss of muscle functions. However, the source of
“Around 87 individuals get diagnosed with epilepsy in the UK every day.”
epilepsy is in the brain. It is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.
Individuals experiencing a seizure may go blank or have an absence lasting a few seconds whilst some individuals fall to the ground. Individuals with epilepsy do lead normal lives although sometimes epilepsy occurs alongside learning disabilities and autism spectrum disorders. In young children
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