Mum who lost son backs drive by charity SUDEP
A West Lothian woman who lost her son to epilepsy is backing a campaign to prevent lives being cut short by the disease.
Chris Jeans is backing the four-year national drive by Sudden Unexpected Death in Epilepsy (SUDEP) Action.
She lost her son Stephen to SUDEP in 2010 when he was just 38 years old.
SUDEP Action’s event took place earlier this month, with the aim of raising over £1 million over the next four years to tackle these deaths.
The Prevent21 Appeal is dedicated to taking necessary action to reduce risk from seizures and from Sudden Unexpected Death in Epilepsy (SUDEP).
Epilepsy claims the lives of at least 21 people each week in the UK, mostly in the young and healthy, leaving families broken and searching for answers.
Chris, from Mid Calder, who is development officer for SUDEP Action Scotland, said: “We were never told about SUDEP, had never heard of it before Steve died.
“The realisation he could potentially have been saved is very hard to live with. This appeal will bring this to the fore.
“It’s too late for Steve but we might help to prevent another death and another family being left devastated.”
In the past 21 years alone, over 21,000 people with epilepsy have died suddenly. A figure the charity believes is likely to be underestimated.
This urgent appeal is campaigning to bring this shocking issue out of the shadows and to the public’s attention.
They hope that by calling for a change in attitude, culture, and action towards epilepsy from health professionals, people living with the condition and their families – lives could be saved.
SUDEP Action is the world leader in taking action against epilepsy deaths, including SUDEP.
Set up by Jane Hanna OBE in 1996 following the death of her then partner Alan, she vowed to help prevent the needless lives lost suddenly each year, which could be avoided with research, improved education and care.
Jane said: “While this fight is not new, we do now know that many of these sudden deaths can actually be avoided, if people were being told about their risks.
“We’re working tirelessly to help people with epilepsy, their families and clinicians, to do what they can to reduce risks now.
“Our work has mostly been funded by those affected by a death, but we do now need urgent support from the public.
“By joining our fight through the Prevent21 appeal, we can move ahead to stop these sudden and tragic young deaths.”
More information about the appeal and how to get involved can be found at www.sudep.org/prevent21.
If you have been bereaved by epilepsy or would like more information about how to reduce epilepsy risks, visit www. sudep. org or call 01235 772852.