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Charity launched with goal of raising awareness of epilepsy

Jasmine DeBraga with Phil Haydon, founder of Sail For Epilepsy and a professor of neuroscience at Tufts University (Photograph supplied)

A fledgling charity hopes to raise awareness of epilepsy in Bermuda and create a safety net for those who live with the condition.

Jasmine DeBraga said she was told she had epilepsy when she was 15, but had not discussed it in public until Monday when she addressed the St George’s Rotary Club.

Ms DeBraga, 28, said: “It has been a very long road and Bermuda has not really acknowledged the fact that there are people here with epilepsy.

“It was because of that that I decided to start a charity, Living for Today.”

She said Living for Today hopes to help raise awareness of epilepsy and create support groups for those affected by the condition.

Ms DeBraga said: “People need to learn more about epilepsy.

“Most people in Bermuda don’t really know much about it at all, and that is something I am hoping to change with this charity.”

Epilepsy is a neurological disorder that causes sudden, recurring seizures.

Ms DeBraga said her epilepsy was inherited and her maternal grandmother also suffered from the condition.

She said that she suffered her first seizure aged 4, but doctors said it was likely the result of a fever.

More than ten years later, when she was 15, she suffered a second seizure, with a third following days later.

Ms DeBraga said she underwent surgery to address the suspected cause, but epilepsy was identified as the real cause after she suffered another seizure as she crossed the street.

She said: “I’m a dancer. I love to dance.

“I was dancing in the street crossing the road and my mom was crossing with me and that’s when I had a grand mal seizure in the middle of the road.

“My mom told me to stop dancing around. She didn’t realise I wasn’t dancing – I was having a seizure.”

Ms DeBraga said she was initially embarrassed and angry about her condition, refusing to wear a medical bracelet and not taking her medication.

She said that she hid her seizures from her family so that she could get her bike driver’s licence – only to suffer a seizure as she rode her motorcycle.

Ms DeBraga said that through Living for Today, she hopes to bring those with the condition together to support each other and share their stories.

She also hopes to bring in a nutritionist to help raise awareness of ketogenic diets – which some studies have shown help to decrease seizures – and to work with pharmacies to expand the options for medication.

Ms DeBraga was joined at the St George’s Rotary Club by Phil Haydon, founder of Sail For Epilepsy and a professor of neuroscience at Tufts University.

He said that one in 26 people will experience epilepsy in their lifetime.

Dr Haydon said his epilepsy was triggered by an incident when he was 15 when he was struck in the head with a brick, but for many others the condition is brought on by genetic factors.

He said that while he has not suffered a seizure in 40 years, one third of those with epilepsy are not medicated.

Dr Haydon said that he launched Sail For Epilepsy as part of an effort to not only raise awareness of the condition, but encourage those with it to push themselves further.

He said: “We are trying to inspire people to live fuller lives.

“For someone with a disorder, it’s easy to hide behind it and let the disorder control you.”

Dr Haydon sailed to the island from Newport, Rhode Island in the Bermuda One-Two Race, with the names of other “crew members”, those enrolled in the charity’s one more step programme, painted on the boat.

He said: “I don’t sail for me. I sail for them.

“We are trying to build this community, talking with each other and supporting one another and inspiring one another to do more.”

For more information about Living for Bermuda, e-mail livingfortoday.bda@gmail.com.

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Published June 17, 2021 at 7:50 am (Updated June 17, 2021 at 7:43 am)

Charity launched with goal of raising awareness of epilepsy

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