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Tuesday, March 13, 2012

Sisters shed skin every day

 
 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.

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, now 18, was the first to be born with the condition. As soon as she was born doctors whisked her away and then broke the devastating news to the couple that their daughter had the rare skin condition.Mr Picken said: ‘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 moisturized 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.’
Sufferers of lamellar ichthyosis are known as snake children, because their hard scaly skin is just like a snake.

The couple were devastated when their second daughter Stacey was born with the condition too.
Mr Picken said: ‘We didn’t think for one moment think that it could possibly happen again. We thought lightening couldn’t possibly strike twice.
But within five minutes of Stacey, now 16, being born her skin started to change before our eyes. It was turning leathery within seconds. It was devastating - it just broke our hearts.’
Both the sisters must constantly moisturize their skin, which grows six times faster than normal skin.
And they have to keep out of the sun as if they start to sweat and overheat it could kill them.
 The couple have since had four more children, Ellie, 11, Megan, seven, Stevie, five, and Samuel, three. The couple carry a defective gene each which causes the condition, but none of their remaining children have the condition.
Mr Picken said: ‘When Sarah was pregnant with Ellie we were very nervous throughout all the pregnancy, and when Ellie 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 bullied because of their skin.  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 we know how lovely our girls are underneath. 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.

‘The girls both stay indoors when it is very hot. We can’t go on holiday abroad 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. 
‘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. ‘ Emma is currently trying to set up a camp in the UK for children who look different.
She added: ‘That is my goal, to set up somewhere where people, not just with our skin condition, but for anyone who looks different, to come to a place where they won’t be judged.’

Mr Picken added: ‘We had been very worried that the girls wouldn’t be able to live normal lives, but they just get on with it. They have both got big personalities and we are proud of them both
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