How I lost my eye at 13 after taking anti-malaria drug — Rivers varsity student

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A 200-level student of the University of Port Harcourt, Rivers State, Angela Nweze, speaks to BIODUN BUSARI about her near-death experience after reacting to an anti-malaria drug that claimed her eye at the age of 13

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Could you introduce yourself?

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My name is Angela Nweze. I am a 200-level student of the University of Port Harcourt, Rivers State, where I’m studying Animal and Environmental Biology.

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I’m currently 22 years old. I’m an indigene of Anambra State, but I live with my parents and siblings in Nasarawa State. It was my studies that brought me to Port Harcourt.

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How did you suffer from Stevens-Johnson syndrome?

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It happened in 2016 when I was 12 years old. I had malaria. My dad went to a pharmacy, and a popular anti-malarial drug was prescribed for me. He bought it and brought it home.

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A month after I took the medicine, I started reacting to it. Firstly, I began to lose weight, but I didn’t feel sick. So, my parents and people around me would ask if something was wrong with me, but I would tell them nothing because I felt okay, though I knew I was losing weight.

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There were no other symptoms of sickness apart from that. So, on a fateful night, my mum and I were having a conversation in front of our house. As I stood up to get something from the room, I just collapsed. I lost consciousness.

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My parents quickly rushed me to a nearby nurse. The nurse treated me, but couldn’t really tell what was wrong with me. So, we left.

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Did you feel well after leaving the nurse’s place?

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No, it worsened. I started having rashes. The rashes were not itchy. Then, after the rashes, I noticed a reddish eye. My parents then thought it was measles or chickenpox.

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From our house in Karu Local Government Area, my parents took me to a hospital in One Man Village near Abuja.

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So, when we got to the hospital, I was admitted for two days. But my condition was not getting better, and they couldn’t figure out what was happening. Then, I was taken to another hospital in Nyanya.

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It lies between Nasarawa and Abuja. I was admitted again and was receiving treatment, but still, my condition didn’t improve. At that point, my parents were scared and worried.

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The hospital in Nyanya referred us to the National Hospital, Abuja. My parents took me there, but they said they could not admit me because there was no bed available.

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They took me to a General Hospital in Wuse, Abuja. I was admitted. They started treating me, and I was diagnosed with Stevens-Johnson syndrome. It is a rare life-threatening disease.

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Did you start feeling better there?

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There was no improvement at the general hospital. So, my mum remembered her old friend. He was a medical doctor at the Federal Medical Centre, Jabi, Airport Road, Abuja. The man is late now.

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So, she called him and explained everything to him. He promised that he would help and told her to bring me to the Federal Medical Centre. My parents took me to the Federal Medical Centre, Jabi, Airport Road, Abuja.

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When we got there, I was admitted for a week. Still, my condition didn’t get better. I was already in a coma then. When they couldn’t handle it, they put me in an ambulance and took me to the National Hospital, Abuja, where they had earlier said there was no bed available.

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They had to find a bed for me because it was an emergency case. I was carried on a stretcher to the emergency ward trauma centre. So, I was admitted there. The doctors and nurses ran several tests to find out what was happening.

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It was confirmed again that I had SJS. They told my parents that there was no particular cure for SJS. However, they promised to give me supportive treatment.

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I was told that my case was not the first case brought there. Many people did not survive it. The medical personnel told my parents that my chance of surviving was 50-50.

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What did they mean by a 50-50 chance?

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SJS had killed many people. The story was what my parents told me because I was in a coma. What they meant was that I could lose my life, but they would try their best. My reaction was already severe. The wounds were already much worse.

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My skin blistered and started peeling.

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Wounds covered all my body to the extent that the hospital bedsheets stuck to my body. When nurses wanted to dress me or clean my body, they would have to separate my skin from the sheets. My nails pulled out. My lashes fell off. My whole body was a total mess. My face was swollen, and my skin was unrecognisable.

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Had you taken anti-malaria drug before that time?

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That’s something I don’t really know, but I don’t think so. I’m not sure.

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Did your parents go to the pharmacist who prescribed anti-malaria drug for you?

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They didn’t. They were all running around trying to save me. According to the doctors at the National Hospital, the anti-malaria drug was neither expired nor fake. The issue was that my body reacts to drugs containing sulfur.

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It was said that any drug with sulfur was not good for my system. It was something we were not aware of. Even though it was not the fault of the pharmacist who prescribed the drug, I am not supposed to take any drug that contains sulfur.

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How do you feel about taking medication after that incident?

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After I was discharged from the National Hospital, I was given a leaflet that contained the medications to avoid. It was written on the leaflet and a piece of paper. To date, I still have it with me.

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So, whenever I’m sick, before purchasing drugs or going to the hospital to see a doctor, I go with it. I explained my condition to the doctor and showed them the leaflet to avoid prescribing drugs containing sulfur for me.

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How many weeks did you spend on a hospital bed altogether?

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I don’t know if I should say two months. Apart from being taken from one hospital to another, I actually stayed about a month at the National Hospital. Thanks to the support from the medical team and a particular pharmacist, Dr Chinelo Okonkwo. She was actually the one who wrote that leaflet for me.

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How have you been coping since you were discharged?

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I was preparing to take my common entrance examination at ECWA School when it happened. When I came back, everything felt so different. I could not associate with my childhood friends the way I used to.

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My skin and face were a total mess. When I stepped outside, children in the neighbourhood would run away from me. I was depressed and battled low self-esteem. I didn’t go out for years until recently, when people started motivating me.

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People would think I had suffered burns, not knowing it was SJS. I stayed indoors. I was unable to face the real world. I hardly made friends. When I gained admission, my coursemates would stare at me until two of them, Gift and Victory, got closer to me.

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They encouraged me and asked what had happened to me. I explained to them, and they accepted me the way I was. We started talking.

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Also, my Head of Department, Prof Sydney Nzeako, saw me one day and asked me to come. He asked if it was SJS, and I said yes. I was relieved to meet someone who knew about it. I explained the whole thing to him, and he encouraged me to stop hiding and instead educate people.

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That was how I started creating awareness about SJS on TikTok. I created the TikTok account in January. I started posting my story in April. I had 36 followers on TikTok, but when I posted the video on how I reacted to anti-malaria drug, my followership jumped to more than 700. The video got 1.7 million views.

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How about your parents?

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My dad is a building engineer. But after the whole thing, things became difficult for him financially. My dad lost his job. He and my mum spent a lot of money to make sure that I recovered from the illness.

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Apart from all the hospital bills, I also underwent eye surgery the following year at the National Eye Centre, Kaduna, when I was 13 years old. I still lost my right eye. I see with my left eye, but I have a corneal ulcer in it.

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It is a struggle with vision due to the complications. The whole thing took its toll on my parents. My mum owns a small provision store in the area where we live. My dad also owns a small business shop.

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What has the response been on TikTok?

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Many people said they didn’t know about it. Some also attested to it. A lot of people should come out and share their experiences relating to their loved ones. I got many messages in my DM and even in my comment section.

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It’s so heartbreaking. The two I vividly remember are those of a lady who commented on my post that her friend went through SJS at the age of one and is currently 33 years old, but lost her sight.

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I also got a message from a woman who said she lost her mum to SJS and feels guilty because she bought the drug for her mum. Apart from the awareness on social media, I’m writing a book on it with the help of my HOD.

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How do you feel about the awareness you have been creating?

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At times, I just wish I had superpowers to cure SJS. But I’m fulfilled as an advocate creating awareness for the public and making an impact.

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Another point is that the Nigerian medical system should come up with allergy testing that everyone would undergo before taking drugs.

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It will help people know the drugs they can take or avoid. Like me now, I react to medicines containing sulfur.

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