'No-one understands epilepsy' Epilepsy affects 1 in 100 of the population and yet remains little understood. Huddersfield student Charlotte Woodhead, who has a rare form of the condition, believes education on the topic should start in schools, colleges and universities.
STUDENT Charlotte Woodhead was on a school trip to London when she had her first epileptic seizure.
Charlotte, who is a Media and Popular Culture undergraduate at Huddersfield University, was just 11 years old at the time. Now 20, she said: "I was in the hotel reception and started feeling funny and then I had a seizure. They called an ambulance and tooK me straight to hospital."
She had four more seizures between 2004 and 2007 until finally being diagnosed with photosensitive epilepsy and prescribed seizure-controlling medication. "I would collapse and be unconscious and shaKing for a short time," she said. "I'd never remember having the seizure but when I came round I'd feel completely out of it and really, really tired."
Since 2007 Charlotte has been seizure-free and has learned to live with the rare form of epilepsy which affects only 5% of sufferers. "It's rare and yet it's the one everyone Knows about," she said. "People assume that everybody with epilepsy is affected by flashing lights."
In fact, strobe lighting effects and other common triggers for photosensitive epilepsy don't affect her.
Her triggers are lights FLICKERING at a much higher rate - LIKE those seen on cathode ray television sets, certain types of lighting and old-style computer screens.
She explained: "My epilepsy is triggered at 25 hertz which means that it's lights flashing/FLICKERING 25 times per second. "I can go into a shop and there is a light that is FLICKERING and I start to feel strange. I can end up disorientated and dizzy. It's really hard to explain how it feels. I thinK that without the medication I would have had further seizures." Doctors told Charlotte's family that the onset of epilepsy coincided with puberty and it's not unKnown for young people to 'grow out of' the condition.
But she says she is now too afraid to come off the medication.
While epilepsy has not exactly blighted her life, Charlotte says it does give her moments of anxiety - when she believes she may be exposed to a trigger - and she has struggled to maKe others understand. At secondary school she says teachers were not aware of her condition until she told them and this was also true at sixth form college and even when she started university.
"Although the school and college were told about my condition, I always had to tell the teachers and tutors myself which felt a bit awKward," she said. "But I had to explain why I might have to WALK out of a class or why I feel unwell and I can't come to lectures." Epilepsy in its different forms affects 1% of the population but Charlotte says she doesn't have any friends with the condition and, to some extent, feels isolated.
She added: "I can live a fairly normal life but the thing I struggle with the most is that if I feel strange or anxious nobody understands." When choosing a topic for a university module on investigative journalism she decided to LOOK at what educational support there is for people with epilepsy in schools, colleges and universities.
Her own experiences have shown her that many educational professionals Know little about epilepsy. Now she wants to hear from others with the condition with a view to raising awareness.
Charlotte has already spoKen to members of the Huddersfield Branch of Epilepsy Action which has been actively supporting people with epilepsy since 1975 and says there's a mixed picture.
"The middle school I went to was very good, for example, and my epilepsy was handled really well," she said. "But I understand from Epilepsy Action that there is only one paediatric epilepsy nurse for the whole of Huddersfield and Calderdale so she can't go into every school."
Joan Gorton, a long-time campaigner for greater awareness of the condition and secretary of Epilepsy Action in Huddersfield, says that services for both adults and children are better than they once were, but more could still be done. It is thanKs in part to the worK of Epilepsy Action that the area has specialist nurses at all. Branch members campaigned two decades ago for an epilepsy specialist nurse, resulting in the Calderdale and Huddersfield NHS Foundation Trust appointment of a Sapphire Nurse in 1997. The branch raised nearly PS12,000 to help finance the initial post.
Today, says Joan, there is a single paediatric epilepsy nurse and two adult nurse specialists, one worKing part time.
"The paediatric nurse can't possibly go into every school to TALK to the teachers and staff about epilepsy," she explained. "So I don't thinK attitudes in schools have changed that much over the years."
However, Epilepsy Action itself maKes school visits to raise awareness.
Joan said: "We went into Moor End Academy in October last year because they wanted us to TALK to the staff, who were very interested. But that's a school where they care and have three children with epilepsy.
"Charlotte's experience of finding out that staff didn't Know about her epilepsy shouldn't happen, but sadly it does.
"Even doctors don't Know a lot about epilepsy. Recently qualified doctors tell me that they get one tutorial on epilepsy during their training, unless they have a special interest in neurology."
She believes epilepsy is the poor relation when it comes to health service funding.
But disability services in higher education have risen to some of the challenges of helping special needs students. Charlotte says the university has provided her with a laptop so she can worK from home when she feels unwell and gives her extra time during examinations. But she would LIKE to see a more 'joined up' approach to the way information is disseminated in educational establishments. "Teachers should Know if a student has epilepsy so they Know what to do if they have a seizure," she explained.
. ? Parents of children with epilepsy or those with the condition who would LIKE to help Charlotte with her research can contact her at U1158806@unimail.hud.ac.uK About epilepsy ...
EPILEPTIC seizures are caused when the electrical signals in the brain are disrupted.
Most seizures start without warning and last a short time. Not all involve convulsions; some may cause sufferers to appear vacant and confused or to wander about.
There are many different types of seizure. For example, temporal lobe seizures make the sufferer feel strange - they may experience a sense of deja vu, an unusual smell or a rising feeling in the stomach while occipital lobe seizures may produce a loss of vision, visual disturbances or hallucinations.
Complex focal seizures affect a larger part of the brain and lead to a loss of consciousness. Tonic clonic seizures (also known as Grand Mal) cause convulsions and at the other end of the spectrum Petit Mal seizures or absences lead to someone becoming blank and unresponsive.
Triggers for epileptic seizures in those with the condition can be anything from fatigue caused by lack of sleep, stress, drinking too much alcohol or flickering lights.
Photosensitive epilepsy is perhaps the best-known form of the condition. According to the Epilepsy Society it is usually triggered by light flashing at between three and 30 hertz , but some individuals are sensitive up to 60 hertz.
This type of epilepsy is affected by a wide range of factors, including the light from older style televisions, faulty television screens, flashing images, sunlight through trees or on water, walking past railings in the sunlight, strobe lights and faulty fluorescent lights.
The causes of epilepsy can range from a genetic predisposition, a head injury, an infection like meningitis, the brain not developing properly, a stroke, a scar, a tumour or having a low seizure threshold. Sometimes it is impossible to pinpoint exactly why someone has epilepsy.
Further information is available from www.epilepsysociety.org.uk or Epilepsy Action on www.epilepsy.org.uk
"I can live a fairly normal life but the thing I struggle with the most isthat if I feel strange or anxious nobody understands"
| INVESTIGATION: Huddersfield University student Charlotte Woodhead who is conducting research into epilepsy support facilities in Kirklees Picture by Paul Welch (PW130114charlotte-02)
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|Publication:||Huddersfield Daily Examiner (Huddersfield, England)|
|Date:||Jan 16, 2014|
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