A LITTLE girl is left with third-degree burns every time she bumps her skin. Nine-year-old Phoebe Crowson was diagnosed with a rare inherited condition at birth, which means that her skin is so fragile that it’ll peel off at the slightest touch. Phoebe, from Peterborough, Cambs., has recessive epidermolysis dystrophic bullosa. It’s meant that she’s […]
A LITTLE girl is left with third-degree burns every time she bumps her skin.
Nine-year-old Phoebe Crowson was diagnosed with a rare inherited condition at birth, which means that her skin is so fragile that it’ll peel off at the slightest touch.
Phoebe, from Peterborough, Cambs., has recessive epidermolysis dystrophic bullosa.
It’s meant that she’s never been able to experience playtime with her friends as she has to spend her lunch breaks in the medical room getting her wounds re-bandaged.
Her mum, Zoe, has spent the past four years fundraising for medical research into her daughter’s condition.
“It is every parents’ nightmare having a child with EB, as she is constantly in pain,” Zoe said.
“Even the trauma of eating is too much for her sometimes.
“I have to give her soft foods like mashed potatoes, but it is like watching your kid eat glass – she has trouble swallowing and her entire digestive tract blisters which includes her bowels.”
Brushing her teeth causes Phoebe to break out in blisters so she can’t have any dental work done in the future.
Zoe says that her condition has “completely robbed her of her childhood”.
Phoebe doesn’t go to parties and isn’t able to play with her mates.
“When clothed, she doesn’t look too bad as it is underneath that is mostly affected from the friction of her clothing rubbing on her skin,” her mum explained.
Recessive epidermolysis dystrophic bullosa is a rare genetic skin disease that makes the skin really fragile.
Symptoms tend to include:
There are four types:
Localised EBS is the most common form of EB. It causes painful blisters on the palms of the hands and soles of the feet that develop after mild or moderate physical activity, such as walking, gardening or playing sport.
There’s no cure yet.
“She has to wear derma silk underwear and seamless footwear with special silver socks but even sweating can trigger her skin to blister.”
Despite the pain, Phoebe has only ever said she wishes she didn’t have EB once.
“She is unable to do any form of sporting activities but she loves playing with her dolls and on the iPad.
“She is likely to moan more about the iPad running out of battery as opposed to her skin.
“Phoebe is a bright girl with a great personality, it is just her skin that lets her down but she’s always very positive.”
In 2015, Zoe set up the Phoebe Research Fund – a charity which has already raised over £100,000 find a cure for EB sufferers.
Phoebe inherited her condition from both of her parents, meaning that she’s in a “category of her own”.
“When you have a child with a rare condition you become the expert, I often get asked by the doctors for my opinion,” Zoe explained.
“Phoebe was unfortunate to inherit the condition from both me and her dad which is very rare.
“Nicholas and I were both oblivious to being carriers as neither of us have the condition, we found out when Phoebe was a few days old.”
Because of her unique situation, there is no funding into research and many doctors aren’t familiar with her condition.
And that’s starting to have an emotional toll on the primary school pupil, Zoe said.
“It is heart-breaking when I drop her off to school and see the sadness in her eyes when she sees everyone as playing as she walks to the medical room so I can give the nurse a handover.
“I actually fear for what life Phoebe can expect, still no cure and more research are desperately needed not just for Phoebe but all EB sufferers.”
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