Graduate’s plea after struggle with epilepsy in school
Lydia Williams was accused of ‘daydreaming’ and being ‘unfocused’ by her teachers in primary school, but here she tells education editor Abbie Wightwick that her ‘absences’ were due to a condition that was not diagnosed until last year...
LABELLED a “daydreamer” by primary school teachers, Lydia Williams was put into a special educational needs class and told she wouldn’t be able to go on to mainstream high school – when in fact she had epilepsy.
With daily help from her parents and grandparents she was able to go on to high school and university, where she finally found out what was wrong more than a decade later.
Lydia, now 21, was diagnosed with epilepsy aged 20 in her final year at university last summer after a lifetime of not knowing why she went blank and daydreamed.
Now on daily medication, the Swansea University business and marketing studies graduate is calling for more awareness of epilepsy among young people, saying schools and parents may be labelling children wrongly as naughty or stupid.
“People think epilepsy is about being on the floor having a seizure, but it often isn’t like that, “said Lydia.
“During my time at primary school I was always slightly behind my classmates academically and would struggle to focus in class from time to time, causing teachers to label me as a daydreamer. Teachers would tell my parents I wasn’t listening and wasn’t focusing. My parents noticed my blank stares but didn’t think it was epilepsy.
“Eventually, I was placed into an SEN class. My parents and grandparents would help endlessly to teach me basic maths and English outside school hours.
“Towards the end of my time at primary school, it was estimated on my school report that I would not pass the subjects required to move up to high school. I eventually gained not only my GCSEs, but also my A-levels and a 2:1 degree.”
But Lydia says she only managed that with help from her family after school, and supportive teachers at St Teilo’s High in Cardiff, although it still wasn’t recognised she had epilepsy. Eventually she got the grades she needed and went on to university, something she and her family never imagined when she was at primary. But she was still having blank stares and absences.
Absence seizures, one of the 40 different types of epilepsy, affect around 10,000 children in the UK but few receive prompt treatment or support because momentary blackouts, which can happen between 50 and 200 times a day, are often mistaken for daydreaming, the charity Young Epilepsy said.
Lydia, who works at Primark in Cardiff, says her absences have decreased. Although her recent diagnosis was “overwhelming” she is glad she now knows what is wrong, her employers have been understanding and she hopes to follow a career in business or marketing.
“Nobody recognised that these ‘blank stares’ would be later diagnosed as seizures related to my epilepsy. It was not until I, myself, considered that it was worth seeing a GP about my blank stares.
“These blank stares were beginning to spoil job opportunities and create a fear of driving. Brushed off the first time, I went back a second time and it was finally arranged for me to have an EEG examination at the University Hospital of Wales. I was finally diagnosed with focal epilepsy and photosensitive tendencies.”
Doctors at UHW told Lydia she was not born with epilepsy, but it had always been in her genes and as her brain developed, so did her epilepsy.
She believes other children may be undiagnosed and says all teacher training should include information about how to spot “invisible disabilities” like epilepsy so children don’t get labelled, and get the medication they need.
“I do think epilepsy goes under the radar and might be mistaken for other things. At university I noticed I would have blank stares more if I was feeling anxious and it was getting in the way of my life.
“When I went to my doctor and explained what was happening and described it she referred me to UHW and said it could be linked to anxiety. When I got to the hospital one of the neurologists told me it was epilepsy after I had an EEG. I feel relieved I had the diagnosis.”
Young Epilepsy warns some children are labelled naughty when in fact they are having absences, and four in five children affected by epilepsy do not do as well as they should at school.
The charity is also urging teachers to look out for epilepsy.
It is running an appeal to raise critical funds to help more parents and schools recognise symptoms of absence seizures.
“Most schools in the UK will have at least one student who has seizures,” said Carol Long, CEO of Young Epilepsy.
A survey shows that on average children with absence seizures in the UK wait more than a year and a half before being diagnosed. It estimates that more than four in five young people with absence seizures fall behind in class.