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People from around the world will be donning purple on March 26 to raise awareness about epilepsy, educate individuals on the neurological disorder, and help patients overcome the stigma and discrimination associated with the ailment.
Epilepsy, represented by the colour purple, is a common condition that affects the brain and causes frequent seizures, which are bursts of electrical activity that temporarily affects how the brain works.
It can start at any age, but usually begins either in childhood or after people turn 60.
Around 50 million people worldwide have it and according to Dr Mohamed AlKhaja, a consulting neurologist, epileptologist and clinical neurophysiologist at King Hamad University Hospital, there are ‘somewhere between 7,000 and 15,000 people in Bahrain with epilepsy and their voices need to be heard’.
“If epileptic patients in Bahrain organise themselves and start a lobby group or society, they will be heard better,” Dr Mohamed told GulfWeekly. “This might lead to improvement of medical care for patients with epilepsy.”
Bahraini Shouq Marouf took the first step and did just that by sharing her own diagnosis of juvenile myoclonic epilepsy, a condition characterised by recurrent seizures that begin in adolescence, usually between ages 12 and 18, and last into adulthood.
“I got it when I was 15, but two years prior to that, I would always get muscle spasms and lose control of my body and eyes,” said the 27-year-old.
“Those were warnings. I wasn’t diagnosed until I had three seizures. I was diagnosed at Salmaniya Medical Complex where my parents Muneer and Amal Khonji worked as radiographers.”
The unpaid intern, who has lost jobs due to being an epileptic, staged the awareness event over the weekend alongside special needs educator Gloria Anthony from Gloria’s Team and Amena Saltanat from Fitness 365 to educate people on the disorder and break the misconceptions revolving around it.
The idea came about after coffee with volunteers from the unregistered, non-profit charity champions OneHeartBahrain.
Shouq’s dream, since being diagnosed, has been to create awareness about epilepsy. Gloria reached out to make her dream come true and Amena, a mother of an autistic child and a child with epilepsy, joined in.
Together, with help from OneHeartBahrain volunteers, they held the event at Creative Cube Community Space at the Lagoon in Amwaj Islands, with a first aid demonstration, Zumba and yoga sessions and other activities to educate and entertain attendees.
“When it comes to epilepsy, you need to keep calm and relax your mind,” said Shouq. “Since my diagnosis, I have been doing yoga, so I thought it would be fun to include yoga in this event and Zumba because it’s considered a therapeutic sport for some people as well.”
Dr Mohamed was delighted to be a part of it.
“Most patients who take their medicines do really well and are seizure-free for a year or more,” he said.
“They can study and work, get married and have kids, and lead a normal life. There are also patients who have drug-resistant epilepsy and require special care and attention.
“It’s important to comply with your medicines, sleep at least eight hours a day and avoid stressors as much as possible.”
He also shared the different types of epilepsy and provocative factors from flashing lights to running water.
“I see this event as a first step towards improvement in epilepsy care in Bahrain and it’s also a very nice thing to educate people about the disorder,” Dr Mohamed added.
Shouq hopes people stop judging epileptics and realise the disorder is not contagious.
“People see me pop pills because I have to take pills every morning and night and they judge me,” she said.
“I tell them I have epilepsy and they say ‘well you don’t look like it’. I don’t have to show it. It’s an invisible disorder and that’s why it is important to create awareness.”
She calls Dr Farzana Alsayed, a neurologist at Gulf Neurology Clinic, as her role model.
“If I’m having a seizure, please don’t freak out,” Shouq added.
“Usually when people see me have a seizure, they run away. I have lost friends and jobs because of that. I hope after this event people will have a better understanding of it and I would love to work as a project events manager one day.”
