I can surf but I can't take a bath - bbc online

'I can surf but I can't have a bath'

By Jane Elliott Health reporter, BBC News

Bex has to wear her sunglasses to help prevent seizures

History student Bex Dawes is a keen surfer, who loves nothing better than taking her board out and catching some waves.

But despite her love of water Bex, aged 21, from Newport, Gwent, is unable to take a bath.

For Bex has epilepsy and has an average of three seizures each day, when she will blank out for seconds at a time.

Most of the time this causes few problems, but it could be fatal if Bex were alone, such as in the bath.

Dangers from epilepsy

"I was diagnosed when I was 13 with photosensitive epilepsy (sensitivity to light) after having three seizures," said Bex.

"It is triggered by flickering lights, TV screens, computers, etc.

People are always keen to say, you can't do this and you can't do that. Of course there are things that you can't do, but there are things you can Bex Dawes

"It is like I am having a bit like a day dream, but you come back really quickly.

"When you come back it is like somebody has switched the light back on. I can be talking to somebody and all of a sudden they can be saying something different and I haven't got a clue what they have been saying. I can be very confused.

"I have had near-misses crossing roads and I burnt myself ironing at home once - so I don't iron any more.

"When I was younger, someone had to sit with me when I was in the bath. Now I am older, I take a shower.

"I don't cook alone, there needs to be someone there."

Light sensitivity

Bex says, however, that she has not had a grand mal seizure - a large seizure affecting the whole brain - for a couple of years.

She is getting better at controlling her triggers by eating better, not getting overtired, avoiding flickering lights and wearing sunglasses to minimise the effects of light sensitivity.

And she says she is gradually managing to do more by adopting a sensible outlook on life.

"The websites and leaflets I had growing up were very negative about it. I found there are ways of doing things - not everything was restricted.

Bex is learning to avoid her triggers

"I was told I could never swim or travel alone. I was told I could never do anything alone.

"I found that quite intimidating at first.

"I do not get a lot of time alone. Most of my time is spent with people, but I have taken up surfing and can do this provided there are people around.

"Of course there are things that you can't do, but there are things you can."

New website

Keen to get her message across to others, Bex has told her story on the newly-launched epilepsy section of website Youth Health Talk, which aims to help young people learn about their health from their peers.

Dr Ann McPherson, medical director and co-founder of Youth Health Talk and an Oxford GP, says the site is a valuable resource for young people wanting to hear about the experiences of others.

"It gives voice to young people with epilepsy and presents their real experiences. Learning from others in a similar situation can bring so much hope and encouragement and above all, young people with epilepsy can see that they are not alone."

The site features 41 young people talking openly about all aspects of living with epilepsy, including diagnosis, symptoms, medication and side effects.

Among the topics discussed are school studies, relationships and sex.

Ulla Räisänen, senior researcher on the site, says it is filling a much-needed gap in provision.

"There is a lot of information out there, but young people find it difficult to find the information about their particular type of epilepsy - there is such a range - they found it difficult to see what applied to them.

"There was also a lack of awareness in the ways it could affect their lives."

Margaret Thomas, of the National Society for Epilepsy, said it had worked closely with Youth Talk to create the site, and said it would be a great resource.

"Epilepsy is a much misunderstood condition which is still often highly stigmatised. A diagnosis can have a dramatic impact on every aspect of a person's life.

"This site allows young people, who are sometimes quite isolated by the condition, to gain an insight into how other young people with epilepsy are feeling and how they are dealing with situations in their lives.

"This can be enormously helpful in enabling young people to come to terms with having epilepsy, helping to make them feel less isolated and more like any other young person."

Note: This article first appeared on BBC Online last Sunday.