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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.” Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live Fraser Franks undergoing heart surgery – four years after ‘hidden’ condition cut short football career 4 viral TikTok make-up trends you’ll actually want to try Childhood Cancer Awareness Month: What are the warning signs that your child might have cancer?

Las Vegas opens its doors to Formula 1 this week ahead of the inaugural race on the city strip – and anticipation is at fever pitch. After more than three years of planning and $500m spent on a state-of-the-art pit building facility, F1 is on the cusp of its ultimate moment in the American spotlight in the entertainment capital of the world. While the penultimate race of the 2023 season won’t have an impact at the top of the world championship standings, with Max Verstappen having already claimed the title last month in Qatar, the third US race of the year will be unique in the fact it takes place on Saturday night at 10pm local time (6am GMT, Sunday morning). There is also a lavish opening ceremony, planned for Wednesday evening. Former American racing driver Willy T Ribbs – who made history by becoming the first Black man to test an F1 car in 1986 – insists it will be the biggest race “in racing history.” “It is going to be mega – I would not be shocked if King Charles showed up,” Ribbs told The Independent. “I would not be shocked because the A-list is going to be insane. You’re going to be bumping into more celebrities and sports stars than you will fans. “Without any hyperbole, it will be the biggest race in racing history. That encompasses everything – the most talked about and the most glamorous. If you look at Las Vegas, it has a history of putting on the biggest event – whether it’s a boxing fight or an NFL game.” It is a huge week for Formula 1 who, unusually, is promoting the event themselves as opposed to outsourcing the promotion. F1 has a 10-year deal with Las Vegas for a race in Sin City, on the assumption all goes smoothly this week. However, preparations have not been plain sailing, with disruption in the city due to the mammoth construction projects leading to some anger among locals and tourists in recent months. But ultimately, F1 is confident the race will bring in more than $1 billion for local enterprises. “We’re going to bring in something like $1.7 billion of revenue to the area,” said Greg Maffei, CEO of F1’s parent company Liberty Media. “I want to apologise to all the Las Vegas residents and we appreciate that they have their forbearance and their willingness to tolerate us. “It’s not just for the benefit of fans who want to view. We hope this is a great economic benefit in Las Vegas. We hope this is the most difficult year with all the construction that went on and things will be easier in the future. “There will be 105,000 people so the sheer scale of it, even for Las Vegas, will be the largest event Las Vegas will have,” Temperatures are expected to drop to around 12C during sections of the race weekend, presenting a different challenge to the norm for the drivers and teams. There is also the possibility of rain for qualifying on Friday night. LAS VEGAS GRAND PRIX - SCHEDULE Friday 17 November Free practice 1 - 4:30am Free practice 2 - 8am Saturday 18 November Free practice 3 - 4:30am Qualifying - 8am Sunday 19 November Race - 6am All times GMT F1 has raced in Vegas before, in the parking lot of the Caesars Palace hotel in 1981 and 1982. Yet this event, twisting around the city’s famous landmarks including the Bellagio Fountains and the new Sphere building, should take the razzmatazz up to the next level. “Vegas is all about show. When the drivers get on the track they’re going to put on a show,” Ribbs added. “For Max, he might have won the world championship – but he still has races to win. And he hasn’t won the most races in the history of F1, so there’s the incentive. It’s also just seeing who can knock him off. “Who’s going to be the team and the driver to win the first Las Vegas Grand Prix? If I was the promoter, that’s how I’d be promoting it. If I was talking to the drivers in the drivers’ meeting, that would be my message. The championship is decided, but you guys go knock it out anyway and put on the best show for the fans and for TV. “I think Vegas will knock it out of the park – and take Formula 1 in this country to the next level.” Read More F1 2023 season race schedule: When is the Las Vegas Grand Prix? Michael Schumacher fans set for rare insight into F1 legend’s life in new documentary F1 boss urges teams to improve and close gap after Max Verstappen dominance Martin Brundle predicts F1 sprint change to produce ‘thrilling’ Saturdays in 2024 Machine Gun Kelly defends bizarre clash with F1 presenter at Brazilian Grand Prix Las Vegas hospitality workers’ strike poised to derail F1 race

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