How to manage the stigma around epilepsy

DW (English)

Epilepsy isn’t caused by spirits or demons but a neurological condition that affects the brain and causes unprovoked seizures. In this episode, Sarat Kaka shares her journey with this disease.

Transcript

00:00Just imagine you're walking down the road and someone next to you drops to the

00:05ground and starts violently shaking. What do you do? Panic? You're confused? This

00:09might feel like a movie scene but it's not. It's the reality of a lot of people

00:12who live with epilepsy every single day.

00:17Epilepsy affects over 50 million people globally with 80% of them living in low

00:23and middle-income countries like Nigeria. Yet, it is one of the most misunderstood

00:27conditions. We're going to talk to someone whose journey with epilepsy changed our

00:31entire life. When I finally regained consciousness, I noticed people were just

00:36standing, looking at me. I was so sad. I went home and I decided to take my own life.

00:47Welcome Sarati and I'm so glad you're sharing your story with us. What was your

00:52experience like with epilepsy? I was 16 years in high school when I

00:57I had this sudden hit on my forehead and I fell. At what point did you see a doctor to

01:04get a diagnosis? I was having reoccurring severe. I did MRI then. I did EEG. Then I was

01:11diagnosed with severe. Yes, but could you take us back to how you felt? I didn't know what

01:14was going on. I just thought it was a normal headache. Neurology, when he was talking to

01:19my mom, he told my mom, I don't think your daughter knows what's going on. I started taking

01:26control release drug. Yeah. And I was still having constant seizure. I would have seizure

01:33four, five, seven times in a day. And I was isolated. As I was saying indoor, epilepsy in

01:41Yoruba means warakwa. So when you have warakwa, people don't move to you because they think it is

01:46spiritual and it is contagious. Epilepsy is not a spiritual attack. It's a condition

01:53where the neurons of the brain fire abnormally, leading to the symptoms, you know, seizures.

01:58And three out of four people in low and middle income countries such as ours don't get treatment

02:03for this, not because the treatments don't exist, but it's either because they can't access

02:07it, they don't know is available, or they simply just can't afford it. How did you handle the stigma?

02:13So my first experience with depression was in 2014. And that led me into committing or trying

02:27to take my own life. So I was in coma for two months. After the coma, did anything change?

02:34I accept the condition. I said to myself, there's nothing you can do. You just have to keep taking

02:41your drugs, go out more, mix with people. The thought just came to my mind. Okay, why

02:47not have a draft on your phone? Emergency contact. I usually know or know when I'm about to have

02:54seizures. I prepare myself. I remove my wristwatch. I remove my jab. I remove my shoe. I show the

03:00person next to me the notes on my phone. What to do when I'm having an episode. There was a time I met a

03:07last mile lady. So I gave her the notes. She read it. And to my surprise, she gave me back

03:13my phone and left. At that moment, I had to sit somewhere with my baby. I was hoping someone

03:19would help. I'm so sorry, sir.

03:31Then I gave the phone to one at bureau. And that was the best thing that I did that day. Immediately,

03:41he took my daughter and took me to a park. I woke up in my daughter's car.

03:57In many parts of Nigeria, and even outside Nigeria, a lot of people who live with epilepsy are not just

04:04backing with the condition. They are battling with the fear and ignorance of other people. And

04:09unfortunately, this could lead to isolation and exploitation.

04:13What other ways are you managing your condition yourself?

04:16I joined the Second Left Nigeria. I volunteer and I listen to people with this condition.

04:24I share on my social media platform. I talk about my condition.

04:29So let's jump straight into the DW Africa Facebook community. The center is from Lagos,

04:34Nigeria, and it says, some say it's somehow connected to spirituality.

04:38Is this true? Well, Santori, the short answer is no. There are a lot of reasons

04:43why a person might develop epilepsy. Some of them could be things like brain tumors,

04:47could be brain infections, could be traumatic brain injuries, genetic abnormalities.

04:51Others are what doctors call idiopathic. In other words, we cannot definitely say this is what the cost is.

04:59I have some good news. Epilepsy is not a death sentence. With early diagnosis and right treatment,

05:08about 70% of people can live a seizure-free life with their anti-seizure medications.

05:13And you don't need sophisticated equipment for this, as most of it can be treated at a primary healthcare center levels.

05:18Surgery might be reserved for people who respond poorly to oral medication.

05:22What are some of the triggers that you've identified for yourself?

05:25My first trigger would be stress, then lightening.

05:31Lightening?

05:32Yes. A loud, sudden sound.

05:35Yes.

05:36I personally, I am inspired by your story. You know, your story has taken me through so many waves of emotions.

05:45Thank you for sharing your story with us. But before we go, is there any message you want our viewers to know?

05:51I want everybody to know that epilepsy is not spiritual. It is not contagious. Don't label us. Thank you.

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