07/02/2012 08:07 GMT | Updated 22/05/2015 06:12 BST

Snake Skin Sisters: Rare Condition Means Girls' Skin Grows Six Times Faster Than Normal, And Sheds Every Day

 Snake skin sisters: Rare condition means girls' skin grows six times faster than normal, and sheds every day Worldwide Features

These are the brave sisters whose skin grows SIX times faster than normal. Stacey and Emma Picken shed their skin every day after being born with a rare condition.

They are the only sisters in the UK known to be born with rare condition called lamellar ichthyosis, which affects only one in 600,000 people. Their four younger siblings do not have the genetic condition.

They have to be smothered in cream daily to make their condition more bearable and the girls can't go outside in the sun as it could kill them.

Their father Steven, 53, who lives with wife Sarah, 39, in County Durham, said: "We are so proud of them - and they have a very close bond as they know what each other is going through.

"The girls just get on with their lives as best they can. They have to have two baths a day to try and soften their skin and they have to wash their hair too every day as the condition affects their scalps too.'

Emma was the first to be diagnosed with the condition when she was born 18 years ago.

The moment she was handed to the ecstatic new parents all those years ago, they realised something was wrong.

"Something didn't look quite right. Emma's skin was scaly and bright red. She didn't look like a normal healthy pink baby at all," recalls dad Steve, from Newton Aycliffe, Co Durham.

"The doctors quickly took over. They whisked Emma away, leaving Sarah and I bewildered. What was wrong with our daughter?


Then the doctors told us some devastating news. Emma had an incredibly rare skin condition. Her tiny body was covered in hard scaly skin, with a band of tight skin around her chest, so tight that she could hardly breathe.


"The doctors said they would have to cut through it. It was a tough band of skin squeezing her little chest. Luckily when she was eight days old the band snapped on its own.

"We had to keep her tiny body moisturised constantly to try and soften her scaly skin. We were desperate to know if she would grow out of it as she grew older. But doctors said she wouldn't."

Emma was diagnosed with a condition called lamellar ichthyosis. It would mean that she would suffer it for the rest of her life.

Emma and Stacey Picken in their Primary school photo Worldwide Features

Sufferers are known as snake children, because their hard scaly skin is just like a snake's.

"Sarah and I were devastated - what would the future hold for our little girl?" says Steve.

"We took Emma home and tried to get on with our lives. When Emma was a year old, Sarah fell pregnant again. We were thrilled, and didn't for one moment think that it could possibly happen again, that we would have another baby with the same condition. 'Lightening can't strike twice,' I told Sarah."

The couple's second daughter, Stacey was born a pink colour, but within five minutes her skin started to change before Steve and Sarah's eyes.

"It was turning leathery within seconds," says Steve.


I turned to Sarah. 'She's got it too,' I told her. It was devastating - it just broke our hearts. I knew how cruel people could be - what would the future hold for our girls?


"We had to take Stacey home and have her constantly moisturised too. We had to keep both the girls out of the sun too. As they can't sweat because of their condition, it is dangerous if they overheat as it could kill them. Their skin grows six times faster than our skin, so we have to be very careful."

 Emma Picken in toddlerhood and baby Stacey Worldwide Features

Steve and Sarah went to see a genetics expert, who found the couple both carry a defective gene which causes the condition.

"It meant that we had a one in four chance of our children having this condition. We hadn't even known," says Steve.

"Sarah and I have had four more children since, Ellie, nine, Megan, five, Stevie, three, and Samuel, one. We knew that they had the same risk of having the skin condition too, but luckily they are all fine.

"When Sarah was pregnant with Ellie we were very nervous throughout all the pregnancy, and when she was born we breathed a sigh of relief when we saw that her skin was normal.


It was hard when Emma and Stacey started school, as they have been badly bullied because of their skin. People can't seem to see beyond it. They have been taunted as 'cornflake girls,' and called 'scabby' and 'scaly'. People have even called them freaks.


"If we are out with the girls, children look at them and say to their parents,' Urggh what is wrong with them?'

 The Picken family Worldwide Features

"When Emma first started school no one would hold her hand when all the children held hands in a circle. They have been singled out as different right from the start. It is heartbreaking as I know how lovely my girls are.

"They have friends at school, but it hasn't been easy for them and I'm so proud of them as they have both held their heads high and done well at school."

Emma is now 18 and Stacey is 16, and they are the only two sisters in the UK with this type of skin condition.

"It breaks my heart when I hear the cruel taunts as I just wish that people could see what lovely brave girls they are underneath. I am powerless to help them, and I only wish I could," says Steve.

 Emma and Stacey Picken with their younger sister Ellie Worldwide Features

The girls both stay indoors when it is very hot, and the family can't go abroad on holiday as it would be too dangerous for them:


We do go away in the UK, and whilst other people want lots of hot sunshine on their holiday, we pray for rain. At least if the holiday is a washout, the girls don't have to be stuck indoors.


"Stacey dries out faster than Emma does as she is fair skinned, whereas Emma is dark skinned. They can't do sports day at school because that would be dangerous for them too, to run around in the sun. When they were little we used to spray the girls with a water gun to keep them cool at night in the summer.

"I'm so proud of them - and they have a very close bond as they know what each other is going through. Emma is a budding cartoonist and she is even talking to people in America who organise camps for children with this skin condition where they can have a few days away, and no-one stares at them because everyone is the same.

"Emma wants to get the same thing up and running over here, which would be a fantastic achievement and we are behind her all the way."

What brave girls to grow up with this condition - and how horrid to deal with taunts and bullies growing up.

Good luck girls!

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