Sydney girl’s skin blisters and tears at the slightest touch

It's been called the worst disease you've never heard of, and the unrelenting pain it brings upon sufferers is unimaginable, like being covered in third-degree burns.

Epidermolysis Bullosa (EB) is a rare disease affecting just 1000 Australians. It's a genetic condition which causes the skin to blister and peel, often at the slightest touch.

When Lylah, 4, from western Sydney was born, she was missing large patches of skin on her feet and hands.

Lylah, 4, has a rare condition which causes her skin to blister and tear at the slightest touch.

Lylah's father, grandfather and uncle all have the same condition, although in a far milder form.

While her mother, Lara Scott, was aware there was a 50 percent chance of Lylah being born with EB, she told she was still unprepared for the severity of her condition.

"Lylah was born with no skin on either of her feet or her hands up to her wrists. When I saw her, I was in shock," she said.

Lylah needs to have daily dressings to help protect her wounds and stave off infections.

Lylah was transferred within hours to Westmead Hospital where a specialist team showed the new parents what would become their punishing daily routine, hours of wrapping wounds with dressings.

Every day, Ms Scott spends around one-and-a-half to two hours lancing Lylah's blisters and bandaging them. Lylah also needs weekly bleach baths to ward off the ever-present danger of infection.

Sometimes an act as simple as putting on a jumper can cause the skin on little Lylah's wrists to bubble with blisters and tear.

A photo showing the blisters and tearing caused by Lylah's jumper.

"It's so hard, we just have to be really careful," Ms Scott said.

"She can't wear jeans or denim, or anything with tight elastic in it. We try and avoid those sorts of clothes altogether, it's just not worth the risk.

"When she was a baby, we used to have to turn her clothes inside out because of the seams."

Ms Scott said her daughter is sassy, feisty and resilient, but to watch her suffer was devastating.

"I can't imagine the pain the she goes through every day. It's really heartbreaking," she said.

"She has started prep now and she actually said to her class the other day, 'When I grow up I don't want to have these blisters anymore.'"

There are three main types of EB. The form Lylah's takes does allow for some hope that she will eventually grow out of the disease.

"I can't tell her when it's going to get better, or if it will, but other people I've spoken to who have the same type say the symptoms start to lessen at around 14 to 15-years-old," Ms Scott said.

Lara Scott pictured with her daughter Lylah.

Ms Scott is sharing her daughter's story as part of Wound Awareness Week, which starts today, and also to help educate the public about EB.

One of the family's biggest challenges recently was having to explain to Lylah why people were staring at her.

"People stare – they think it's contagious and they don't want to come near her or touch her," she said.

"It never bothered me as much before, I could always shake it off, but now Lylah is starting to notice."

Ms Scott said her message was simple.

"We are happy to answer questions. If you want to ask a question, just ask.

"She is the same as everyone else and not contagious."

'She was never free of pain'

Simone Baird is the spokesperson for DEBRA Australia – a national, charity-run support group which helps around 200 families living with EB.

Ms Baird said the lives of families touched by the little-known disease, especially the severe cases, were extremely difficult.

"It's relentless, it's 24/7 and every single day feels like Groundhog Day," she said.

As well as the hours spent every day on wound care and dressings, many sufferers needed to be fed with tubes through their stomach, she added.

Simone Baird, spokesperson for DEBRA Australia, is pictured here with her daughter Eliza, who died in 2017.

"Their oesophagus lining is torn and blistered, they get strictures in their throat – it's just endless," Ms Baird said.

"To say that it's a skin condition it's really just the tip of the iceberg."

Ms Baird knows the cruel suffering people with EB are forced to endure, and the difficulties families face, all too well.

Her daughter Eliza was born with an extremely severe form of EB and tragically died just six weeks short of her 18th birthday in 2017.

"She was never free of pain. She never lived one day without it," Ms Baird said.

"It's a shocking disease, I wouldn't wish it on anybody."

Ms Baird said because of its rarity, it was hard to attract funding for research in EB, but more knowledge about the condition was desperately needed.

"We do need more research into it because it an awful existence, it's painful, it's debilitating and those with it suffer terribly," she said.

"We don't have the answers, we don't have a cure at the moment, is just management of the condition.

"We're keen for more so research to be carried out that could go on to, hopefully, to one day find a cure."

Contact reporter Emily McPherson at

Related Posts

Leave a Reply

Your email address will not be published. Required fields are marked *