A woman who was born with a rare inherited skin blistering disorder which caused her to get “bullied” and feel “like a freak” throughout her childhood and teenage years, as well as forcing her onto a soft food diet of “bananas and custard” for weeks at a time, now writes inclusive children’s books with a focus on disability to encourage “other children to grow up with confidence”.
Vie Portland, a 52-year-old confidence coach, author and speaker from Winchester, was born with epidermolysis bullosa simplex generalised intermediate but was not formally diagnosed with the skin condition until she was 28.
According to the NHS, epidermolysis bullosa (EB) is a rare inherited skin disorder that causes the skin to become very fragile, and any trauma or friction to the skin can cause painful blisters.
Vie is yet to find a treatment that helps her condition, and her feet are regularly covered with huge internal blisters which feel like she has “stones under (her) skin.”
Her condition even means that she cannot eat “anything acidic or too peppery” and often spends weeks eating “just bananas and custard”.
She has also developed thoracic outlet syndrome, chronic bursitis, and often has spasms, because of walking with a limp to try to ease the pain.
Now, Vie writes inclusive children’s books to raise awareness about living with a disability, because she grew up “afraid that there was no one else like (her)”, and hopes to write a book about someone with her condition next.
Vie told PA Real Life: “So it feels like I’ve got stones under my skin all the time on my feet and it doesn’t matter how much you try to explain that to someone people just don’t get it.
“Even things like if I meet friends for a drink in a lovely pub garden – I’ll be in agony because of walking on gravel and it takes so much energy out of me.
“I can’t eat anything acidic or too peppery – sometimes I have to eat just bananas and custard for weeks.”
Vie was born with the skin condition, saying: “I was born with no skin on my bottom and had some skin missing on my left foot.
“The charity that works with people that have EB wasn’t around then – I spoke to someone recently from Debra, the charity, and they said if you looked at all the people on a double-decker bus, you’d expect to find at least one person with psoriasis.
“But, you’d have to wait for over 700 buses before you met someone with EB.”
As a child, Vie regularly had huge blisters all over her feet and the back of her heels.
She explained: “I remember wearing jelly shoes one summer, and heat and friction are two of my triggers.
“Throughout the day, blisters grew around the rubber shoes and I had to have the pair of shoes cut off my feet – it was excruciating.”
When Vie was a teenager, she was very self-conscious of her condition, she explained: “I was in constant pain, and I struggled with all shoes and walking anywhere.
“We’re always told not to pop blisters, but when you have EB they tell you to pop them because they get so big.
“I didn’t know that at the time and it was just so painful.
“People were noticing how I walk and I was embarrassed to show my feet – I didn’t have a normal childhood because of this.
“Even something as simple as opening a bottle makes several layers of skin come off and cause me to have raw skin all over my hands, I was told this was weird by other people.”
Doctors were baffled by Vie’s condition, over the years, she was told she had different types of eczema and even that she was allergic to her own sweat.
But, at age 28, she was diagnosed with EB by a dermatologist in London.
She said: “I just grew up believing that it was my fault and I was afraid that there was no one else like me.”
“It all just made sense.
“They even took pictures of my feet for a medical journal because it was so rare.”
After getting her diagnosis, Vie began researching the charity DEBRA, which specialises in EB.
She said: “I started finding out that there were people like me – it was amazing, growing up, I was bullied and felt like a freak.”
Since then, Vie has sadly not been able to find a treatment that helps her condition.
“There’s no cure for EB but things have moved on a lot over the past 20 years,” she said.
“We have special types of dressings and creams which can help alleviate the pain.”
On top of this, because Vie has been walking “unusually” for most of her life, she has developed thoracic outlet syndrome, chronic bursitis, and often has spasms.
Vie said: “It can be frustrating at times because it just feels like no one will ever understand what it is like.
“For most people, blisters are a bit painful, but it’s all right, but for me, it’s one of the worst pains in the world.”
Now, Vie is focussing on raising awareness about living with a disability, and has recently written two inclusive children’s books called ‘Where Are We Going?’ and ‘Who Am I?’.
She said: “I want other children to grow up with confidence and not to feel like a freak like me.
“Children aren’t born with prejudice and I think it’s really important to teach them about all of our amazing cultures and worlds.
“In my books, I don’t explicitly say the character is disabled until the discussion questions at the end – I want the character to be accepted and not defined by their disability.
“I think people have more in common with each other than things that are different, and that’s a beautiful thing.
“I’m hoping to write a book about someone with my condition – that’s my next plan.”
