Thursday 29 September 2016 | Published in Regional
FIJI – Fiji is a country that attracts many tourists seeking to bask in its abundance of sunshine, but for a significant number of Fijian locals, sunlight is something they try their best to avoid.
The country has one of the world’s highest rates of people with albinism, yet very little about it is known by locals.
But a new film, which has documented the lives of indigenous Fijians living with albinism, hopes to change that.
The worldwide average of people with albinism, which affects the pigmentation of skin, hair and eyes, is 1 in 17,000.
In Fiji, the rate is 1 in 700.
The short film, Coming Out Of The Shadows, features four families living with albinism who share their experience of what life is like for them.
Dr Margot Whitfeld, an Australian dermatologist who last year organised the first Fiji Albinism Awareness Symposium, said it is not known why the rate of albinism is so high in Fiji.
“One of the possible theories is that if you are living on an island community – for example of 3000 – and even if your family chooses not to marry someone in the immediate family it’s possible that five or six generations ago, you may or may not be marrying or partnering with somebody from the same original gene pool as yourself,” she explained.
“So it’s very easy for a hidden mistake to be able to reappear.”
Until recently, the challenges faced by people with albinism in Fiji remained largely hidden.
Many of those families living with it attended Dr Whitfeld’s symposium alongside director Christine Nestel, who said she had no idea how prevalent it was before the gathering.
“You know, so many Australians go to Fiji for holidays. But when I mentioned it to friends here, you know, people that have been to Fiji, they were just amazed when I said, ‘did you realise that in Fiji they have one of the highest rates of albinism in the world?’ And they were like, ‘really?’”
Nestel said she created the documentary to give a voice to some of the families.
“I thought it would be great just to make a short documentary, so that people – you know the families of people with albinism and the people with albinism themselves, they could tell their own stories.”
“That was the idea, so we could see it through their eyes,” she said.
“Each time there was the feeling of difference and suffering from that because the children with albinism are going to school, they’ve got white skin so therefore they’re different.”
“In some cases they get bullied but generally they just feel very different. And it’s very difficult for people in that situation.”
For Esala Eseru, 14, starring in the film was a way to share his experience of a difficult time at school.
“It’s very hard blending in with other students,” he said. “Going with other students that are not like me, different colour than me.”
“I don’t catch the bus. Because every time when I go in the bus, as soon as I enter people start looking at me. It makes me feel very, sometimes sad and angry, but I’m used to it.”
Albinism also creates challenges in vision and skin sensitivity increases the risks of damage and sensitivity to light.
Many of the students at Fiji’s School for the Blind have albinism and hope to break an ongoing cycle of struggle.
“When these people were at school, when they were younger, they didn’t do well at school because they couldn’t see,” said Nestel.
“You know, they couldn’t see the blackboard. And because they weren’t getting a good education they were ending up having to work outside in the fields.”
Long-term sun exposure greatly increases the risk of skin cancers like melanoma.
But families often struggled with the cost of sunscreen for their children, Nestel said.
“ I have to admit I was sort of horrified when they said it,” she said. “And then I later just went into a few pharmacies in Suva and it was so expensive, sunscreen. It was more expensive than here in Australia.”
Nestel said there was a strong concern among families around how their children would have access to good healthcare and education, and she hoped the film would gather more support for those who live with the condition.