28 Sep 2016

Struggles of Fiji's albino community brought to light

10:34 am on 28 September 2016

Fiji is undoubtedly one of the most popular tourist destinations in the Pacific, a place many travel to, just to enjoy the sun.

But what many tourists don't realise is that a significant number of locals are trying to avoid the sun.

For the first time, a genetic condition affecting a part of Fiji's indigenous population has been documented on film.

Fiji has one of the highest rates of people with albinism in the world yet very little is known about it by locals.

The worldwide average rate for people with albinism is 1 in 17,000. In Fiji, the rate is 1 in 700.

The disorder affects pigmentation of the skin, hair and eyes, resulting in very fair skin and white or light-coloured hair.

A recently released short film 'Coming Out Of The Shadows' is helping to raise awareness of albinism and features four families who share their experiences living with the condition.

Sisi, a young Fijian girl who lives with albinism stars in the short film "Coming Out of the Shadows."

Sisi, a young Fijian girl who lives with albinism stars in the short film "Coming Out of the Shadows." Photo: Supplied/Christine Nestel

Dr Margot Whitfeld is an Australian dermatologist who organised the first Fiji Albinism Awareness Symposium which took place last year.

She said it was not known why the rate of albinism is so high in Fiji.

"One of the possible theories are that if you are living on an island community for example of 3,000 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 huge challenges people with albinism faced in Fiji remained largely hidden.

Many families living with albinism attended the symposium alongside director Christine Nestel who said before then she had had no idea how prevalent it was in Fiji.

"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?'"

She created the documentary to raise awareness of albinism and 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."

The film highlights the difficulties of living with albinism, in a country which knows very little about it.

"Each time 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," said Ms Nestel.

"In some cases they get bullied but generally they just feel very different. And it's very difficult for people in that situation."

Esala Eseru, 14, features in the film "Coming out of the Shadows."

Esala Eseru, 14, features in the film "Coming out of the Shadows." Photo: Supplied/Christine Nestel

Among those interviewed was 14 year old Esala Seru.

"At high school it's very hard blending in with other students, going with other students that are not like me ... different colour than me," he expressed.

"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."

People with albinism also face challenges with their vision and the risk of skin damage. They experience reduced sharpness and increased sensitivity to light.

Many of the students at Fiji's School for the Blind have albinism and hope to break the cycle of people with albinism in Fiji struggling in its education system.

"When these people were at school, when they were younger, they didn't do well at school because they couldn't see," explained Christine.

"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 yet Ms Nestel says families struggle with the cost of sunscreen for their children.

"They can't afford sunscreen. I have to admit I was sort of horrified when they said it."

"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."

Ms Nestel says there is strong concern among families around how children with albinism will have access to good healthcare and education.

She hopes the film will help gather more support in Fiji for those with albinism.