The story of Maya, a model who have Epidermolysis Bullosa for 19 years

News24xx.com -  Maya Spencer-Berkeley, 20 years old is a beautiful woman that has a chronic genetic skin condition. But, until the age of 18 months old, she was just like any other kid, with baby soft skin and bright eyes.

But when she started crawling, huge blisters popped up all over her body from the friction of the floor on her skin. When her parents took her to the doctor, she was diagnosed with a rare genetic skin condition called Epidermolysis Bullosa (EB), which affects only half a million people worldwide.

After many tests, the doctor says that her skin lacks the protein that binds the layers together, and it can to blisters althought with the slightest touch.  So since she can to walk, she can not to  do the ordinary things that kids do, and she had to wear thick padding all over arms and legs.

Every day, her daily routine has always been focused around her skin, which requires a lot of care. Every morning, she must remove the bandages and take a bath with sea salt and baby bottle steriliser in it for about 20 minutes, then she take shower with a special soap, and dry herself carefully.

"With a small needle, I drain the blood blisters on my legs, before applying an antiseptic gel to any open wounds. Next, I apply cream to the patches of healthy skin, before bandaging up my entire legs and sticking large plasters over my bum and lower back. Because my legs are so long, I need lots of rolls of bandages," she said.

She also have a narrowing of my oesophagus so she prone to choking on food and get blisters in my throat. And every four years, she have an operation to widen her oesophagus, under general aesthetic. 

But her life has change. Because she’ve always been tall and skinny, she was often scouted by modelling agencies.

"But as a young teen I brushed their offers aside: there was no way I was confident enough to display my skin. After all, if I was too embarrassed to even tell my friends about my condition, how could I show my flesh on a catwalk or for a camera?"

But at 17, she was tired of secrets and started to tell her friends about her EB. 

"It was such a relief when I opened up – they were so understanding and were interested, because for years they’d never wanted to ask about my skin but they knew I didn’t want to talk."

Now, Maya live in North London with her parents.

"Working full time is difficult at the moment, though one day I’d like to go to university and get work for a charity. I’ll carry on with modelling too – I think it’s important for people to see someone with skin like mine – I wish that when I was a kid there had been girls to look up to who were a bit different."

 

 

 

 

 

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