'Cruel' video of Hong Kong woman with rare skin disease taken down by YouTube after storm of protest

Images of daughter with rare skin condition spark online outrage and prompt parents to launch petition against site carrying shock clips

PUBLISHED : Sunday, 27 September, 2015, 3:48am
UPDATED : Sunday, 27 September, 2015, 12:14pm

A video clip showing a Hong Kong woman with a rare skin condition has been removed from YouTube after a barrage of complaints over the unauthorised use of her image by a website that is designed to offend or startle the viewer.

Images of Mui Thomas - who has Harlequin ichthyosis, a rare congenital disorder that leaves her skin red raw and prone to infection - appeared in a video titled 5 Terrifying Rare Birth Diseases of all Time.

The clip was posted on YouTube this month by Elite Facts, which touts itself as a "news media website" and "the world's #1 fact source".

It was removed last week after the video triggered support on social media that snowballed around the globe and hundreds of complaints were flagged.

To remove a clip, web users may make privacy or copyright complaints directly to YouTube or "flag" the offending video. The uploader has 48 hours to take action on a complaint.

The incident surrounding Mui, 22, has prompted her parents, Sai Kung residents Rog and Tina Thomas, to start a petition calling on YouTube to end shock clips on the video-sharing site.

"This is about all people with visible differences, not just our daughter. We want to raise awareness, to let people know that this sort of thing is not tolerated," Tina said. "Fifteen other people were in that cruel video. Our daughter … has not been raised to be a source of entertainment for weak-minded people."

The Thomases adopted Mui when she was three years old. Mui said she had been alerted by a friend to the video, which also featured another friend with the same condition, US-based Hunter Steinitz.

"I had a bit of a meltdown. I was very angry and upset. It took me a while to calm down," she said. "I don't know what's worse, this or being cyberbullied."

Meanwhile, Australia-based writer and activist Carly Findlay, who had Netherton syndrome, sent an open letter to YouTube chief executive Susan Wojcicki to comment on the use of the video-sharing website to bully people with rare medical conditions.

"Elite Facts have ridiculed medical conditions and appearances," Findlay wrote. "They've termed their appearances as 'terrifying', which does nothing to decrease the stigma of living with a visible difference. They are not informing or educating, they are exploiting and bullying. Through allowing comments, they are encouraging hate speech."

All of Elite Facts' 30 videos, posted in the past two months, feature picture montages with titles such as "10 people with extra body parts", "10 photos taken right before death", "men/woman you won't believe actually exist!" and "10 unbelievable people with extra body parts." All have dramatic voiceovers.

Elite Facts did not reply to questions.