THE mother of a young student who died suddenly is calling for parents to be warned about the serious risks of epilepsy.
Diane McKissock had been helping her daughter Rachael, 22, cope with the condition for more than a decade when the student who had been accepted for a place at Glasgow University, died following a seizure.
However, the first time she heard of the condition which killed Rachael was when she saw it on her death certificate and checked what it meant on the internet.
Three years on, she is appealing for clinicians and specialist nurses to give parents more support when their child is diagnosed with epilepsy and to explain there is a possibility they could die with little warning.
Sudden and unexpected death in epilepsy (SUDEP) kills around 50 people in Scotland a year, many of them young people.
New research, commissioned by the Scottish Government following a Fatal Accident Inquiry into the deaths of two teenage girls in Fife, found most young adults diagnosed with epilepsy want to know about the problem.
The survey of 27 patients found far from making them give up, information about SUDEP made them want to get on with life.
Ms McKissock said: "If I had known about it, I would have tried to find out more about it and what I might be able to do to help. There are a lot of children who are going through diagnoses of epilepsy and their parents have no idea...
"I think as soon as the child is diagnosed the parents have to be sat down in front of a consultant and an epilepsy nurse and have everything explained. I think epilepsy nurses should come to the home, see how things are situated, see if the family can cope."
Rachael was 10 when she suffered her first major seizure on Christmas morning, after a series of what are known as "absences" when she lost awareness for short periods.
From then on the seizures occurred unpredictably, leaving her with migraines which confined her to bed.
Ms McKissock said the family were given little information about how to manage and what the condition could mean for Rachael. "It was just tablets, tablets all the time," she said. "A lot of them would make her really sleepy or depressed and she was trying to study and everything was against her - but she worked through it."
Rachael was a business management student at Ayr College. An achievement award has been set up in her memory, celebrating her positive attitude. Her acceptance for a place at Glasgow University arrived in the post after her death.
"We are always expecting Rachael to walk through the door," said Ms McKissock. "She was louder than life."
Lesslie Young, chief executive of charity Epilepsy Scotland, said: "We know from calls to our helpline that families are devastated and find it harder to deal with losing their loved one from SUDEP if they were unaware seizures could be potentially fatal. We agree that parents need information on SUDEP and we know forthcoming national guidelines for adults with epilepsy recommend that this information is given early to young people aged 16 to 30 who are most at risk."
Jamie Hepburn, minister for sport, health improvement and mental health, said: "We want to ensure that everyone living with a neurological condition, such as epilepsy is able to access the best possible care and support that they need right from the start - this includes access to information about their condition."
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