Sunday 21 October, 2018

T&T journalist sheds light on seizures

Dionne Baptiste

Dionne Baptiste

Sitting in a bank on March 20, 2008, while waiting for her mother, Dionne Baptiste fell to the ground in convulsions.

She was 20-years-old and it was the first time she ever experienced anything like that.

She spent ten days at the Port-of-Spain General Hospital in Trinidad’s capital but no solid diagnosis was given.

Baptiste would go on to suffer 45 episodes a day and it wasn’t until a year later in 2009 that she was flown to Cornell Medical Centre in New York where doctors diagnosed her with seizures.

Baptiste is a journalist today and is using her platform to educate others about the condition and to provide a space where other seizure sufferers could feel some sense of community.

On Sunday, November 27, she will host Moms & Mimosas, a brunch event to highlight the disorder.

“November is Epilepsy Awareness Month. I am doing Moms & Mimosas to raise awareness about seizures, sensitise people, and dispel myths and to let other people with this condition know that they are not alone,” the mother of one explained, noting that there are 42,000 people suffering from seizures in T&T.

“When I was going through my thing I didn’t know anyone else going through this. There was no one to talk to who would understand. It is only after it got out that I had from seizures that a guy from school reached out to me and said that his brother had seizures but he died from complications,” she said, stressing the importance of reaching out to other sufferers.

Baptiste said in her experience there is still a lot of ignorance about seizures and she has lost many friends who did not understand or know how to deal with her condition. She was even barred from continuing her education at the then Caribbean Union College (CUC) now known as the University of the Southern Caribbean (USC).

That ignorance even extends to medical circles especially since her symptoms didn’t fit the textbook description.

“What used to baffle them with me is that nothing precipitated the attacks, I would just fall into a dead faint,” she said.

She said doctors were reluctant to classify her as a seizure patient and would ask if she was beaten with one medical practitioner going so far to tell her she was faking.

Baptiste said at Cornell she had to wear a machine on her head for 24 hours to register her brain waves. She said the doctors, after analysing the results said that the way her brain is wired caused a surge in electrical waves which would result in seizures.  

Baptiste has since learned how to manage her condition. At Cornell, she was placed on Lamictal, which she said is the best drug she has been on so far. She also knows her triggers.

Stress, she said, is one of them.

“I reach a phase where I only focus on what is important and I have learned to leave work at work,” she said.

Chocolate, cheese, alcohol, lack of sleep and bleach are also triggers, she said, noting that she has had to learn herself.

The intensity of her migraines is her only indication that a seizure is coming.

“Since 2008 I would get them consistently so if I have headaches rated over six I know seizures are coming.”

It’s been over four months since she had a seizure, the longest she has gone since she was first diagnosed. She said since her pregnancy two years ago she has learned to take better care of herself even though her actual pregnancy was challenging as she did have a few episodes and main concern was her unborn child.

Baptiste credits her stubborn nature for overcoming all obstacles and is determined to help those who are facing challenges to live their life the way they wish because of societal ignorance.

Moms & Mimosas is scheduled to run from 9.30 am to 1 pm at Eopsotopeia Lounge in Port-of-Spain. Tickets are TT$300 and include food and drinks. For more information visit the event page on Facebook.