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Epilepsy – Breaking the stereotypes
May 27, 2022

Epilepsy is a neurological disorder affecting the brain activity and causing frequent seizures (bursts of electrical activity in the brain that generate abnormalities in the way it functions). In other words, your brain cells are constantly sending messages to each other through “electrical activity”. During a seizure, the brain gets a sudden burst of electrical activity, at an enhanced level.

With almost 1 in 100 people in UK affected by Epilepsy, one would assume that there is enough information spread across different media, to get everyone familiarized with this condition. However, after chatting with Phoebe, one of Mumby’s clients, we understood how little do we know about the subject.

Phoebe is a 23-year old young lady who loves make-up, music, and getting her nails done – things most of the girls her age are passionate about. However, Phoebe was diagnosed with epilepsy 5 years ago, after her 18th birthday – an aftereffect of her brain tumor, that she “affectionately” named Trevor. She’s currently supported by Victoria, one of Mumby’s carers, who quickly became like “a nurturing motherly figure” for her.

How does a seizure feel like?

“The last seizure I had was in October, last year. Normally, I cannot tell when I have a seizure. I lose consciousness, I fit a lot, I do not know who I am or where I am. However, my nan said that before I have a seizure, I tend to speak gobbledygook – I use random words that make no sense. After, my body is exhausted from all the fitting and tossing. I wake up tired, with massive headaches, and I need to sleep for hours to recover.”

What can trigger a seizure?

A lot of things, such as intense flashing lights, tiredness, stress. And the problem is that you get exposed so many times during the day to very bright lights. That can be exhausting for the eyes. For example, if I go to Tesco’s, I have to wear sunglasses to protect my eyes.”

Misconceptions about medication

The information normally distributed online mentions that seizures do not usually require emergency medical attention, unless they last longer than 5 minutes.

“This is wrong. If I have a seizure, I need Buccal Midazolam administered immediately and 999 dialed straight away. With my condition, waiting for 5 minutes to see whether the seizure stops can have severe repercussions. This is one of the misconceptions that people need to be educated on.”

Are there any changes that should be made in order for the world to be more “epilepsy-friendly”?

“I would like to be warned before an ad that contains flashing lights on the TV. Or, you know, on Tik Tok, when there’s a video that can be visually triggering, I would love to know in advance. Even on Spotify, if I am looking for a song that I want to play, there are very bright short videos displayed, without any prior warning. I would really like to be aware of these things before I’m getting exposed to them. Also, I would like for people to start asking questions. I prefer to be asked what’s wrong rather than stared at and silently judged.”

With all the challenges she’s facing, Phoebe pushes to be as independent as possible. She currently goes to the gym again and plans to start walking on her own by Christmas, this year, being a true example of strength and motivation for everyone who listens to her story.