Grieving mother raises awareness of epilepsy which took her daughter’s life

Dec 18 2007 by David Higgerson, Liverpool Daily Post

Merseyside mother Sandra Sandland felt ashamed at not understanding why epilepsy had killed her daughter. She told David Higgerson what she has done about it

IT WAS the news which no mother ever wishes to receive. Yet, for Sandra Sandland, being told her daughter had died was something she had already braced herself for.

Carolyn Sandland had epilepsy, and lived an active life in London, where she worked for the HSBC bank in Canary Wharf.

“I always knew that she could have a seizure and that something could happen as a result which could lead to her dying,” said Sandra, from Gateacre, south Liverpool.

“It might have happened on a Tube platform, for example. But I never knew she might go into a seizure and not come back out again. And that’s what happened.”

And for Sandra, 61, grief at losing her daughter in 2005 was mixed with what she describes as “shame”.

“I have worked in the health service for most of my life, and worked in health promotions, too. I feel I should have known that epilepsy could be fatal in itself, and just how important it was to take the medication prescribed with it.

“When Carolyn was diagnosed with epilepsy, I read all the literature and learnt a lot about the condition, but didn’t realise that epilepsy, in itself, could be fatal.

“But it can be, and I lost my beautiful only child as a result of it, and it’s possible that her death could have been avoided. It’s hard to believe that we can be so ignorant in the 21st century.”

In the weeks and months after Carolyn’s death, Sandra learnt that she wasn’t alone in thinking she’d researched epilepsy well, only to find out there were large gaps in her knowledge.

According to research, 40% of epilepsy deaths could be avoided – and many people believe better understanding by the public as a whole could prevent so many deaths.

Sandra said: “Carolyn used to talk to one of her friends who suffered another condition. People also are often happy to talk about other conditions which affect them.

“Lots of conditions are manageable, like epilepsy is, but like epilepsy, they can also carry the background risk that they may be life-threatening.

“But for some reason, some people feel ashamed to have epilepsy and don’t like to talk about it, so people don’t understand it or know how to help people with it.

“Carolyn had confided in her flat-mates, and there were times when she’d have a seizure in the shower and they’d come and help her, after they heard her thrashing around. But in so many other places, all normal places she’d go as part of her normal everyday life, that help may not have been there, and I’d like that to change.

“It is about managing risks, knowing how to help, and also making sure the medical profession investigates Sudden Unexpected Death in Epilepsy (SUDEP) cases so that research can help prevent further deaths.”

CAROLYN was first diagnosed with epilepsy when she was 17. Times of stress, such as the death of her father – well-known opera singer Paul Denemy – in 2003, often made seizures more frequent, but Carolyn, who was approaching her 30th birthday at the time of her death, felt she was on top of the condition, Sandra said.

“She was determined never to let it get in the way of her life, and she didn’t. She had travelled a lot, had a great career and was enjoying living in London. But I always think to myself now that perhaps I should have done more to make sure she took her medication, perhaps that could have made a difference.

“Perhaps I should have been checking she was keeping appointments, making sure she understood how important it was. I should have dug more deeply, and I regret that I didn’t.”

Now, however, Sandra is determined to make a difference – by making as many people as possible aware that epilepsy can be a killer, and what people can do to help.

She has become heavily involved with Epilepsy Bereaved, a charity which works to support the family of epilepsy victims and also campaigns for better awareness, understanding and medical support for epilepsy.

One of the most recent activities was an awareness event during National Epilepsy Week, at Lee Valley Millennium Centre, earlier this year .

The event raised a lot of money for Epilepsy Bereaved, and Sandra intends to repeat it. Staff at Epilepsy Bereaved describe her as an inspiration to them, and a great support to others who find themselves in the same position she did.

Sandra said: “I feel we have a duty to get the message out there, to do all we can to make people aware of what exactly epilepsy is, what people can do to help and generally give people a better understanding of what happens.

“I want to take every opportun- ity I can to help people have a better understanding of epilepsy.

‘IF I, as a health professional for all those years, didn’t understand just how serious it was, then many other people will be the same.

“There needs to be more research, so much is still not understood about the condition.

“Many sudden epilepsy deaths are avoidable. If knowledge helps people deal in those circumstances, then it will have made a difference.

“I am incredibly proud of Carolyn. She was born with a high spirit. Her laugh was always the loudest and her joy was infectious.

“I went to HSBC, not long after she died, to see where she worked. Her desk was as she had left it, and everyone spoke so warmly about her. She had been planning a 30th birthday party. We still gathered, but for a memorial service.

“The support I received from her friends was wonderful, and helped me through it, and through her funeral back in Liverpool.

“I was blessed to be Carolyn’s mum. I have her keyring she gave me which says ‘I am glad that we 2 are 1’ and that is how we were. I was prepared that Carolyn was going on a journey soon, as she loved travelling.

“But I did not think it would be so far and so long. Hopefully, better understanding will prevent other mothers having to face what I did.”

FOR more information, visit www.sudep.org.uk

davidhiggerson