By Danny Baggott @Dan_Baggie
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Videographer / director: Scott Murrish
Producer: Danny Baggott, Ruby Coote
Editor: Sonia Estal, Grant Hanson-Vaux
Shardai, 24, has lived her life in constant pain, pain that has been likened to having your body covered in second-degree burns.
Epidermolysis Bullosa, or EB, affects just one in every 50,000 children in the United States and Shardai, who lives in Palm Bay, Florida, now uses a wheelchair to get around and has to change the bandages that she wraps around her burns at least twice a week.
But despite the terrible hardship her condition has brought to her, Shardai continues to thrive and battle on – attending college, volunteering at her local church with friends and even driving her mother’s car.
She remains determined to make something of her life.
Shardai told Barcroft TV: “EB is a rare genetic skin disorder where my DNA is mutated and doesn’t produce the full amount of proteins that are responsible for holding the skin layers together.
“Repeated friction causes it to blister or come off.
“I no longer know what it’s like to not be in pain.”
There is currently no complete cure for EB and so with the help of her mother, Carol, all Shardai can do is make sure to manage the pain as best as she can.
Carol, 58, said: “Shardai was diagnosed at birth.
“When she came out, the nursing staff and doctor all crowded around her.
“I knew she was alive, because she was crying. But I could see that she didn’t have any skin on her legs.
“A few days later, they told me it was EB and there’s no cure. It’s hereditary.”
Shardai’s condition has also led to the loss of her hair and fingernails due to her blisters becoming scarred.
Despite her physical appearance being so harshly attacked, Shardai learnt to adapt early on in life and would bravely deal with any bullies herself.
She said: “When I was a kid, people’s reaction to my EB was a lot different.
“But maybe it was different, because I cared more back then and now I don’t.
“Living with this condition has taught me to watch what I say back to people. I didn’t get picked on or bullied because I wouldn’t tolerate it if someone said something to me.”
Whilst Shardai has relied on the support of her mother to pull her through the hardest times, she has always wanted to do things for herself.
Carol said: “Shardai has always been able to adapt to things. If she wants to do something, she’ll do it.
“I was never going to be one of those parents who held her back. If she wanted to climb a tree, jump on a trampoline or ride a horse – I would let her.”
And Shardai’s close friends have also been a great help for her during her time at college.
Long-term friend, Jonathan Logan, said: “I first met Shardai at school.
“I asked her why she looked like a mummy and she started telling me all about EB. That shows the kind of person she is.
“She gets down sometimes, but she is a tough cookie. I think she handles it so much better than most people would.”
Shardai has tried her best to not let her condition define who she is as a person – and her friends and family would agree that she has now achieved this.