there's no shame in epilepsy
by Jenny Bryan
'I was so ashamed,' recalls 16-year-old Katie. 'I didn't know what it was and I didn't know how to accept it. I thought people would think I was different and stupid if they knew I had epilepsy.'
© C4
Katie was diagnosed with epilepsy when she was nine. Here first seizure was so mild that the doctors put it down to an asthma attack rather than epilepsy. It wasn't until she'd had several fits that the diagnosis was made.
'My attacks were all different. Sometimes my mouth would go numb and I couldn't speak, other times I'd fall on the floor and be jerking around or go stiff, or I'd just be dazed,' Katie explains.
Unfortunately, Katie wasn't treated by an epilepsy specialist when she was first diagnosed, and the drugs she was given didn't suit her. At 10, she was having as many as 15 fits a day.
'I was either doped up in a corner or hyped up like a five-year-old, and I put on a lot of weight,' she says. 'At primary school, my friends got used to it, and just said "Katie's having a fit again".'
In the end, Katie was referred to a doctor who specialised in epilepsy treatment. Her drugs were changed, her seizures became less frequent, and most of them happened at night. This enabled Katie to keep her epilepsy a secret from all but her closest friends at secondary school. Her attacks went down to one a month, and then one a year. Now, she hasn't had a seizure for three years and has come off her medication. She's studying at college and she's looking forward to learning to drive when she turns 17.
To other teenagers, she says:
'Don't be ashamed to have epilepsy. The more open you can be about it, the easier it is to deal with it. The more you bottle things up, the harder it is.'
epilepsy stigma
Epilepsy affects about 440,00 people in the UK – but you'd never know it. There's still a social stigma to saying you have seizures, but not asthma. Epilepsy is caused by electrical changes in small or large parts of the brain. Yet, with the right treatment, most people with epilepsy have few if any seizures. There are two main types – partial and generalised seizures. If you have a partial seizure, you may just get twitchy, feel tingly or numb, or you may carry out automatic actions such as picking at clothes or moving items around but be totally unaware that you are doing anything.
Generalised seizures are usually more obvious because people often lose consciousness, fall to the ground, and their arms and legs jerk around. This used to be called 'grand mal' but is now called a tonic clonic seizure. Sometimes, people only lose consciousness for a few moments, and don't fall down. Their hands may shake and their eyelids flutter, and they may make small chewing movements. This used to be called 'petit mal', but is now known as a simple partial seizure.
For the majority of people with epilepsy, the cause is not clear. But it can follow head injuries, arterial disease, brain tumours and brain infections. About 10 per cent of people who, like Steph in Hollyoaks, sustain a head injury, go on to develop epilepsy. For about half of these, this happens within the first week of the injury, and the rest as much as several years later.
no need to be scared
Knowing what to do if someone has a seizure makes it a lot less scary:
- Don't try to restrain someone during a seizure, unless they are in real danger. Instead, move furniture or anything else that might injure them out of the way.
- Do not attempt to put anything in their mouth.
- If possible, roll them onto their side, loosen clothing around their neck and put a pillow under their head.
- Often the person will recover naturally within a few minutes and be able to tell you what help they need
- If you're worried, call for emergency help or someone with first aid experience.
living normally
Drug therapy stops seizures in about a third of people with epilepsy and reduces their frequency in another third. About two-thirds of those with well controlled seizures can, like Katie, eventually stop their drugs without having a relapse.
Between attacks, most people with epilepsy lead perfectly normal lives, and can work or go to school or college, and take part in sports and activities. They are no more likely to be bad, mad, aggressive or violent than anyone who doesn't have epilepsy.
Some young people do resent having to take drugs to control their seizures and to watch out for things that can trigger attacks. Alcohol can reduce the effectiveness of anti-epilepsy drugs, and recreational drugs such as cannabis, ecstasy, heroin, amphetamines and solvents can trigger attacks. Missing meals, late nights and forgetting to take your medication can all increase your risk of having a seizure.
Cathy Queally, epilepsy specialist nurse at Kings College Hospital, London, understands that teenagers don't want their epilepsy to stand in the way of a good time.
'If they're going to be out till late one night, I try to get them to have an early night the previous night. If they miss a dose of their medication, I advise them to take it as soon as they remember, and then move the next dose back a bit,' she explains.
'I also suggest that they carry a small identity card in their bag that says they have epilepsy, then if the worst happens and they have a seizure, people know what's happening. It also helps if a friend you're with knows what to do if you have an attack,' she adds.
Many parents find it hard to let teenagers with epilepsy go off on their own and stay out late, drinking and clubbing. But all teenagers want to be independent and in charge of their lives. Cathy points out that the desire to get a driving licence keeps many young people with epilepsy on the straight and narrow. They can apply for a licence at 17, just like everyone else. But they must have been seizure-free, with or without medication, for at least a year, or only had seizures in their sleep for at least three years.
girls are special
Young women who use contraception do need to take extra care. Some anti-epilepsy drugs reduce the effectiveness of the contraceptive Pill, so they may need to change their epilepsy medication or use another method of contraception. They'll also need expert advice if they are thinking of becoming pregnant because anti-epilepsy drugs can harm babies in the womb.
help and info
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organisations
Epilepsy Action
New Anstey House
Gate Way Drive
Yeadon LS19 7XY
Helpline: 0808 800 5050 (Mon-Thur 9am-4.30pm, Fri 9.00am-4pm)
E-mail: helpline@epilepsy.org.uk
Website: www.epilepsy.org.uk
Member-led epilepsy organisation that aims to improve the quality of life and promote the interests of people living with epilepsy. There's a section on the website especially for teenagers and there's help available for friends and family.
Epilepsy Bereaved
PO Box 112
Wantage OX12 8XT
Bereavement Support Contact Line: 01235 772852 (24 hours)
E-mail: epilepsybereaved@dial.pipex.com
Website: http://dspace.dial.pipex.com/epilepsybereaved
Provides information and support for families who have experienced the loss of a relative or friend through epilepsy, as well as health professionals and people with epilepsy.
Epilepsy Scotland
48 Govan Road
Glasgow G51 1JL
Helpline: 0808 800 2200 (Mon, Tues, Wed, Fri 10am-4pm; Thur 10am-6pm)
E-mail: enquiries@epilepsyscotland.org.uk
Website: www.epilepsyscotland.org.uk
Provides confidential information, advice and support to people with epilepsy, their relatives, friends or carers, and to professionals. The Freephone Helpline can be accessed in over 170 different languages.
Epilepsy Wales
P.O. Box 4168
Cardiff CF14 0WZ
Helpline: 08457 413 774 (Mon-Fri 9am-5pm)
E-mail: office@epilepsy.wales.co.uk
Helps people in Wales who have epilepsy, and their families and carers. Contact the helpline for information and advice on matters relating to epilepsy and details of self-help groups and publications.
F.A.B.L.E (For A Better Life with Epilepsy)
Lower ground Floor
305 Glossop Road
Sheffield S10 2HL
Freephone Advice Line: 0800 521 629 (Tue-Sat 10am-4.30pm)
E-mail: Fablevns@aol.com
Website: www.fable.org.uk
For the relief of persons with special needs in particular those who suffer from epilepsy, by the provision of Vagus Nerve Stimulators and other such charitable means.
Headway – the Brain Injury Association
4 King Edward Court
King Edward Street
Nottingham NG1 1EW
Helpline: 0808 800 2244 (Mon-Fri 9am-5pm)
Minicom: 0115 950 7825
E-mail: helpline@headway.org.uk
Website: www.headway.org.uk
Promotes understanding of all aspects of head injury and provides information, support and services. Can answer enquiries by letter and telephone on subjects related to head injury and its aftermath. The website contains a wide range of information.
National Centre for Young People with Epilepsy (NCYPE)
St Piers Lane
Lingfield
Surrey RH7 6PW
Tel: 01342 832 243 (Mon-Fri 8.30am-5.30pm)
E-mail: info@ncype.org.uk
Website: www.ncype.org.uk
Dedicated to providing an environment where young people with epilepsy can live, learn and develop, no matter how severely they are affected by epilepsy. The charity works in partnership with Great Ormond Street for Children NHS Trust and The Institute of Child Health.
National Society for Epilepsy
Chesham Lane
Chalfont St Peter SL9 0RJ
Helpline: 01494 601400 (Mon-Fri 10am-4pm)
Website: www.epilepsynse.org.uk
The National Society for Epilepsy is committed to providing information and support to people with epilepsy. We also provide care for people with epilepsy through medical and residential services.
websites
Charge
www.charge.org.uk
Interactive site which aims to raise public awareness of epilepsy, as well as provoke discussion around the condition. Includes personal experiences.
DIPEx.org
www.dipex.org
This site offers a unique support service for patients affected by a range of conditions and is designed to provide a true insight into the impact of illness, offering personal experiences on many issues and the answers to those questions patients are sometimes too afraid to ask.
Epilepsy Research UK
www.epilepsyresearch.org.uk
Established with the aim of funding independent research into the causes, treatment and prevention of epilepsy.
Epilepsy Support
www.epilepsysupport.org.uk
Created by a person with epilepsy, this personal website exists to help anyone who needs support with epilepsy related issues.
Epilepsy Youth in Europe
www.eyie.org
Set up so that young people throughout Europe would have a place to go to find out about epilepsy. The chat room provides an opportunity for young people to discuss epilepsy and its effects on their lives.
Young People and Epilepsy
www.epilepsy.org.uk/youngpeople/getahead.html
Part of the Epilepsy Action website specifically aimed at teenagers. Offers advice and information, factsheets, a chance to send in questions, and a section specifically for teenage girls with epilepsy.
reading
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Coping with Epilepsy by Fiona Marshall and Pamela Crawford (Sheldon Press, 2006) |
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Epilepsy: The Ultimate Teen Guide (It Happened to Me) by Kathlyn Gay and Sean McGarrahan (Scarecrow Press, 2002) |
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The Illustrated Junior Encyclopaedia of Epilepsy by Richard Appleton (Petroc Press, 1996) |
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Seizures and Epilepsy in Childhood: A Guide by John Freeman, Eileen Vining and Diana Pillas (The Johns Hopkins University Press, 2003) |
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(July 2003, resources updated November 2008)
