Epilepsy portraits

Africa, Documentary, Epilepsy

With my commission for MASL two years ago I had to take a number of portraits of people who have epilepsy in Freetown, Sierra Leone. Here are a few of the portraits along with some of the stories behind them. All writing refers to the photograph above it.

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Aminata ‘Baby’ Bangura. Her sister-in-law, standing behind her, know what to do when Baby gets an attack. I’d taken a number of shots of Baby’s numerous scars. The entire right side of her face is burnt tissue and you can see edges of her scars on her wrist and arms and shoulder. I decided in this photo to leave the scars in shadow.

Now that she is being helped by the Epilepsy Association her future, though still hard is beginning to look brighter. Until recently her scars have been reminders of what will still happen to her, and not simply relics from the past.

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The road into Freetown.

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Mohammed Sesay is 8. Near the end of my couple of weeks shooting and filming I was with Max (head of EASL) in his office transcribing the various interviews I’d done. We weren’t even aware that Mohammed and his mother Aisha (holding him) were outside waiting in the clinic.

Suddenly Max’s wife came in and said that there was a boy outside having a fit. Max quickly advised the rather distraught mother what to do and I asked Max to ask if it was ok to photograph. Aisha was not bothered at all, her concern naturally wrapped up in her son. This photo was taken shortly after Mohammed stopped fitting. The man is holding up his shorts because Mohammed wet himself.

The boy was put on phenylbarbitone to control the fits. It worked well, but unfortunately, a few weeks after I’d finished this project, the boy’s community pressured Aisha to take her son off the medication and see a traditional healer. He started getting fits again. It took a  good deal of persuading my Max to get Mohammed back on the medication.

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Amara had an epileptic fit while out playing football with his friends. He damaged his back but managed to hobble back inside his house to lie down. However when he tried to get up he couldn’t get up. In fact he couldn’t walk again for another year, bound to a wheelchair.

He managed to start walking again because a visiting health worker discovered him and knew that physiotherapy could help. But you can see from the above photograph that his back is still misshapen. His family simply can’t afford the money to get an operation on his spine. It is clearly going to limit his physical abilities in the future, but no-one I knew at the Epilepsy clinic was an expert on this – they were just making sure that he kept taking his treatment to prevent any more fits.

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At one point I found myself in the rather unusual position of being able to photograph a traditional doctor (or herbalist) perform his usual… um, routine (?)… on a young boy with epilepsy. Max knew the herbalist and persuaded, with a fistful of notes, to let me photograph. In this case he understood that it was important to get such images. The boy’s family didn’t have to pay anything.

I told the herbalist to simply go about the routine and I would photograph around them, so this is an unposed portrait. Max spoke to this herbalist after to make sure that epilepsy cases were passed onto the Epilepsy Association. I know that in some cases of leprosy the herbalist gets paid for every correct and undiagnosed case of leprosy they pass on. In the long-run it saves a lot of money, and having traditional doctors on your side is a good thing.

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The fear of epilepsy, mainly because it’s seen as demonic, can affect school children who have had fits. One girl at this school was told to leave that school and not come back. Luckily the Epilepsy Association found out and intervened – and as well as speaking to and reassuring the school teachers responsible, organised a series of talks on Epilepsy for the school children. The girl who was ‘rejected’ is now back at school, taking regular drugs and has no epilepsy-related troubles at all.

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Ebironkeh (sitting down) has a horrendous story. She was having regular fits, and began to notice that her knickers were pulled down, she was sore, and there was physical evidence that someone had been raping her while she was unconscious, fitting.

She eventually caught the man – someone living in the same house as her – as he was still on top of her. She went to Max of the Epilepsy Association who, along with one of his colleagues, confronted the man. The culprit ‘promised not to do it again’. And the police were never called as it was decided it was a ‘family matter’.

Ebironkeh isn’t sure how many times she’d been raped. She was so ashamed that she moved away from the house to start a new life on the other side of Freetown. Now she runs a store selling manure and cement.

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Memuna is blind as well as having leprosy. She is clearly intelligent and speaks excellent English. Her daughter and grandson sit behind her. Here she is at the blind institute where she is learning to read braille.

Memuna still has regular fits – indeed I interviewed her a couple hours after she’d had one. She was still very lethargic and couldn’t speak well, completely opposite to the sharp English tongue she had when I first met her – when I took this photograph. Between her having fits and being blind getting a job to get an income so her, her two daughter and her grandson can live is difficult. She often has to ask friends to give her small amounts of money simply so she could buy her epilepsy medication.

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I don’t actually know this man’s name, but here he is hooked up to an EEG machine, which was acquired by Medical Assistance Sierra Leone for usage by Dr Radcliffe Lisk – an expert in epilepsy. It gathers information that can help inform what type of medication a patient needs to be put on, and the severity of the epilepsy.

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