New epilepsy support group launches in Bognor Regis

A Bognor Regis family is using its personal experience of epilepsy to help others in the same situation.
Helen Joy with son, Malachi, 12, and daughter, Eden, 11Helen Joy with son, Malachi, 12, and daughter, Eden, 11
Helen Joy with son, Malachi, 12, and daughter, Eden, 11

The Joy family has been through difficult times, with both mum Helen and daughter Eden affected by epilepsy.

They are both now able to control the condition using medication and hope their story will prove helpful to other families.

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Helen is launching Epilepsy Action Bognor Regis coffee and chat group on Wednesday at Brewers Fayre, The Regis, The Esplanade.

Regular drop-in meetings will follow, on the third Wednesday of the month, from 10am to 12pm.

The group will give people affected by epilepsy the chance to meet in an informal setting to support each other and share experiences.

Helen said: “As a family, we know first-hand how daunting epilepsy can be but we also know that it doesn’t have to be a barrier.

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“We are really looking forward to using our experiences to support other people affected by epilepsy through the new coffee and chat group.

“Once the group is up and running, we are hoping to organise some activities in the evenings, or at weekends, so everyone can be involved.”

Helen had epilepsy as a teenager, which stopped her from learning to drive, but after a few years, her seizures were controlled by epilepsy medicines.

She went on to have a son, Malachi, now 12, and daughter, Eden, now 11, and it was the birth of her second child that brought epilepsy to the fore in her life once more.

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Helen said: “When the epilepsy medicines started controlling my seizures, I thought my journey with epilepsy had come to an end.

“But when Eden started having absence seizures, I knew exactly what was going on. A few weeks later, she had a seizure while we were waiting in the doctor’s surgery.”

The doctor referred her to see a specialist and Eden was diagnosed with epilepsy when she was 18 months old.

Epilepsy affects around one in every 100 people in the UK and there are around 7,900 people living with epilepsy in West Sussex.

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“Eden’s epilepsy was really difficult to control at first and this was hard to see as a parent,” explained Helen.

“Even though I knew it was not my fault that Eden had epilepsy and that her epilepsy was not caused by her genes, I still worried that I had done something to cause it.

“Fortunately, Eden’s epilepsy can also be controlled by medication. She has not had a seizure for years.

“She is a really active child who loves ice skating and cycling. We just make sure that she wears a helmet when she’s on the ice or her bike, then she can do everything her brother can.”

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Epilepsy Action is the UK’s leading organisation working with and for people affected by epilepsy.

Having epilepsy means people have a tendency to have epileptic seizures.

It is not necessarily a life-long diagnosis. Electrical activity is happening in the brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This is often referred to as epileptic activity. The epileptic activity causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The brain is responsible for all the functions of the body. What happens during a seizure will depend on where in the brain the epileptic activity begins, and how widely and quickly it spreads. For this reason, there are many different types of seizure, and each person will experience epilepsy in a way that is unique to them.

Each year, Epilepsy Action directly helps more than 1.4 million people to understand epilepsy and treatment options through a range of services, including a helpline, branch network, specialist nurse scheme and an award-winning website.

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The charity improves health care by supporting epilepsy specialist nurses and epilepsy research.

It improves the lives of everyone affected by epilepsy by campaigning for better healthcare and fairer access to education and employment. More than 95 per cent of this life changing support is funded by donations and fundraising.

Having epilepsy can feel like solitary confinement, which is why coffee and chat groups are being set up all across the UK. These give people living with epilepsy the chance to meet each other in ordinary venues like cafés, tea rooms and coffee shops. They offer a relaxed way to meet new people, share experiences and get information on how to learn more about epilepsy.

Following a diagnosis of epilepsy, people can feel like no one understands them. Coffee and chat groups help people to break free from the isolation by helping people with epilepsy, family members and carers to meet informally.

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As well as the new Bognor Regis group, there is also a coffee and chat group in Chichester. Chichester coffee and chat meets at St Pancras Church, East Street, Chichester, every fourth Wednesday of the month, 10am to 12pm.

For more information visit epilepsy.org.uk or call the helpline 0808 800 5050.

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