Albinism conference in Adelaide aims to bust myths about the genetic condition
Posted August 22, 2019 11:56:53
Elizabeth Beales was not diagnosed with albinism until she was 40, but she says growing up she always knew she was different.
- Elizabeth Beales hopes to help debunk the myths associated with albinism
- Albinism occurs in all racial and ethnic groups the in the world
- People living with albinism will come together at a conference this weekend
While the only obvious telltale signs are her white-blonde hair and thick, black-framed glasses, she is now working to debunk the many myths associated with the condition.
Albinism is a genetic condition where people are born with pale hair and skin due to a lack of melanin, and can suffer significant vision impairment.
An estimated one in 17,000 Australians have albinism and Ms Beales said there was no reason people with the hereditary condition could not live a normal life.
“People just don’t know [about the condition] I guess,” she told ABC Radio Adelaide.
“It’s so striking … people can see there’s an obvious difference, but they’re not educated what the actual condition is all about.”
Ms Beales is now the president of the Albinism Fellowship of Australia, which will host a national conference in Adelaide this weekend.
She said the conference would provide information about the condition and help bust some of its myths, including that people with albinism have red or pink eyes.
“Can you see that I don’t have pink eyes?” she asked.
“We have blue eyes generally, they range through blue to brown to all sorts of different colours.
“[But] the biggest thing about albinism … is that our bodies can’t produce melanin, which is what gives colour to our hair, to our skin, also to our eyes.”
Most people with albinism are ‘legally blind’
Ms Beales said she was told throughout most her life that she did not have albinism.
It was not until an eye specialist took a photo of her eye when she was 40 that she was told she had the condition.
“Most people with albinism are actually legally blind, which is something people don’t often understand about it,” she said.
“I don’t have that, my [condition] is on the very top end of the scale. I didn’t tick all the boxes so they said I didn’t have it.”
She said this weekend’s conference would also look at how albinism was portrayed in society and in the media, with one negative example being the albino assassin “Silas” from the 2006 film, The Da Vinci Code.
Albinism ‘stigma’ remains dangerous
The stigma associated with the condition has also been known to put people in danger in parts of the world, particularly in Africa.
Tanzania went as far as placing a ban on witchdoctors in a bid to curb the rising wave of attacks on people with albinism.
According to the United Nations, more than 70 people living with the condition have been murdered in the east African nation since 2000 for black magic purposes.
“In Africa it’s actually the witchdoctors that say if they get the bones or the skin or the hair of people with albinism they can concoct a spell,” Ms Beales said.
“So, they will actually kill people with albinism or chop their arms off or dig them up out of graves.
“So, you can see the stigma, the incorrect information can go a long way.”
Risk of cancer is ‘quite high’
Ms Beales said the conference this weekend would not only provide information, but also bring people together.
She said it would also be helpful for parents of children living with albinism to learn more about it.
“One of the tricky things is we just burn, we don’t tan so the risk of skin cancer is quite high,” she said.
“Because it’s rare, you can go your whole life and not meet someone with albinism, so if you have it, it’s really nice to meet other people with it.
“For parents who have children diagnosed it is a huge thing for them.”
The biennial Australian National Albinism Conference will be held in Adelaide from August 23-25 with delegates and speakers from Australia, New Zealand and the US.