My life on a leash | Action Medical Research

Touching Lives - October 2010

My life on a leash

Unlike most teenagers, Emma Greenhouse is not looking forward to her upcoming 18th birthday. This date has been difficult since she turned eight – and had her first major epileptic seizure. Now, Emma has at least two tonic clonic seizures (convulsive seizures that involve jerking and shaking) every week despite taking five different medications.

Emma suffers with several types of seizure. Two years ago, she spent a long time in hospital after having a lot of them. The time away from home meant losing touch with friends. “It is very hard to have a social life,” she says.

She also experiences absence seizures, where she appears to be daydreaming or switched off, and will, for example, stand turning the tap on and off for 10 minutes, or washing her hands over and over for half an hour. “I do find it hard to articulate when I’m talking and it can be very frustrating.”

As well as not having the usual social freedom of a teenager, she is heavily reliant on her mum, Caroline. “We can’t leave her on her own,” says Caroline, “so, at a time when most 17-year-olds would be totally independent of their mum, she has to spend much of her time with me.”

The severity of Emma’s seizures causes her regular injury including broken teeth. She has nearly drowned several times and has fallen down the stairs head first.

“We never know where we are going to find her: she ends up in all sorts of strange places around the house,” adds Caroline. Emma was once found submerged in the bath after someone had forgotten to drain the water. She had wandered into the bathroom during the night and had a seizure. “Luckily, the splash woke me up,” says Caroline. “I was frantic, trying to pull her out and resuscitate her.”

Emma’s epilepsy gets worse in the winter and she is generally ill on her November birthday. Her moods and seizures are also affected by poor weather. Caroline recalls a holiday when it was very overcast. “One of the worst memories I have was camping in a field a few summers ago,” she says. “We were among the tents, and miles from any medical help, when she went into status [a seizure lasting at least 30 minutes] – a real emergency.

“Everyone on the camp site just looked away politely and pretended nothing was happening. What I really needed was someone to recognise the problem and help us urgently. She really needed medical assistance.”

Epilepsy greatly impacts on Emma’s life, affecting her schoolwork and free time, but what shines through is an inner strength and determination not to let herself be ruled or defined by the condition that runs in her family.

“I was lucky enough to know my great grandmother and she had epilepsy as well but managed to bring up 11 children,” Emma says. “My grandmother has it and my Mum has some small episodes, but she is a county councillor.”

Following these examples, Emma makes the most of her life. She likes competing in local 10k races, cycling, surfing, cooking and camping. She is a whizz at Sudoku and crossword puzzles, and is studying for a qualification, a 14-19 Diploma. Emma also enjoys gardening and runs her own business. What she finds especially hard is people trying to protect her or treating her like a child.

“Sometimes I feel like I’m being dragged along through life on a lead,” she says. “Or sometimes I’m treated as nothing more than a medical file. People want to make me a cup of tea, or get me something to eat, or even do my work for me. I just want to scream at them that I want to do all those things for myself and be independent. I know that I’m always going to need a carer or someone looking after me, but I do get very frustrated sometimes.”

Emma and Caroline are hoping to get a specially trained dog that can detect when someone is about to have a seizure and raise the alarm. The family also supports Action Medical Research. Last year, Caroline and her husband, Patrick, took part in our Suffolk 100 bike ride to raise money. They are particularly interested in the [clinical trial](http://www.action.org.uk/our_research/epilepsy_could_light_therapy_help), funded by Action, that is testing whether light therapy is an effective treatment for epilepsy. This study provides hope for patients like Emma who continue to have seizures, despite trying all medications.

Caroline says: “This research is really fascinating as we have noticed a very distinct link with Emma’s seizures and moods, and the weather. It is not insignificant that her first major seizure was in November.”

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