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Nadia Breen

Jeavons Syndrome: NI woman on 'frustration' at living with rare form of epilepsy

A Co Down woman has opened up on her frustration at living with a rare form of epilepsy which has taken her independence.

20 years ago Kilkeel woman Samantha Campbell was diagnosed with Jeavons Syndrome which is also known as epilepsy with eyelid myoclonia (EEM). Her grandmother also suffers from the condition.

She suffers up to 150 eyelid myoclonic seizures per day and said the condition seriously impacts her life.

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The 31-year-old was diagnosed aged 11 when she suffered a severe seizure that nearly cost her life.

Most children with Jeavons Syndrome start having seizures around six to eight years of age, although they can start anytime between two and 14 years, Epilepsy Action say.

They add: "Because the seizures typically last only one to three seconds (rarely up to six) and may not be noticed by the family, it may not be diagnosed until much later".

Samantha told Be: "I have memory issues due to seizures. My mum and my family said I was diagnosed at age 11 after developing symptoms in childhood. Headaches, clumsiness and poor concentration.

"The main one would have been eyelid fluttering.

"They had suspected something was going on and unfortunately at age 11 I had a life-threatening seizure that nearly took my life. That is when the formal diagnosis was made and it was the first big seizure I had.

"I have big seizures once in a blue moon. The ones that I have more frequently are called eyelid myoclonic seizures."

Samantha wants to raise awareness of her rare form of epilepsy during awareness month this November.

Samantha Campbell (Submitted)

The 31-year-old added: "I have never spoke out about it. It was hard for me up until a few years ago due to personal experience.

"It was just too hard. It has left a lot of mental health impacts in my life due to it threatening my life on several occasions."

Samantha also told how she spends the majority of time at home due to the condition.

She explained: "Day-to-day I can't do anything. I am severely impacted by any type of sunlight, harsh light, strobe lighting... because it could set off my seizures.

"On a bad day I could have over 150 of them... I can't do anything.

"My mum and my family look after me. If it's a very bad day, I can't go out. If it's good, I do try to make plans but mainly it would be my mum leaving me and coming to get to me."

The Co Down woman said some people would not even notice when she takes a seizure.

She added: "You would not notice unless you've known me personally for years.

"I'm not aware when I do it but my family are very much aware.

"The blinds need to be closed, everything needs to be closed. On a really bad day I need to be shut off from the light.

"Other symptoms are stumbling, shaky hands and headaches are a big thing for me.

"I get very frustrated. It has left a significant impact. When I was told it would get harder to control as you get older, it felt very frustrating, very upsetting because it was going to take away my independence.

"And it has, very much so. My mum said she doesn't want to wrap me up in cotton wool and wants to give me some normality in life but it's very hard to do."

Samantha says Epilepsy Action NI have provided her support during her battle.

The charity's website states: "As the name suggests, the main seizure type in this syndrome is called eyelid myoclonia. This usually lasts just one to three seconds (rarely up to six). These seizures consist of brief, repetitive jerks of the eyelids.

"At the same time the eyeballs roll upwards, so that the white part of the eyes is seen, and the head jerks backwards. Some children may have absence seizures at the same time as eyelid myoclonia, causing mild impaired awareness."

There are around 20,000 people living with epilepsy overall in Northern Ireland.

To find out more on this rare form of epilepsy and its symptoms, CLICK HERE.

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