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The Slightly Morbid Reason We Tap Our Glasses on the Bar Before Doing a Shot
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Woman bullied over skin blistering disorder writing books to stop other children ‘feeling like freaks’
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?
2023-09-01 21:15

U.S. maternal mortality more than doubled since 1999, most deaths among Black women - study
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2023-10-14 03:54

Woman 'banned from boarding flight' for inappropriate outfit choice
A woman claims to have been banned from boarding a flight after dressing in cosplay at the airport. Kine-Chan, a 21-year-old model, influencer and OnlyFans content creator, appeared at Navegantes Airport in Brazil, dressed in ‘Rebecca's Cosplay’. Wearing only a black bikini, turquoise wig and black sandals, she claims she was told she wasn’t dressed appropriately and was banned from boarding the flight. Sharing the alleged incident on Instagram (@kinechan2.0) with her 612,000 followers, Kine-Chan wrote: “Xuxus, a very annoying situation happened this weekend!” “I tried to board at Navegantes airport dressed as Rebecca's Cosplay for an event. I already knew that I could be late, so I was dressed so as not to waste time and could go straight to my room. “But I was told to go home and change clothes because the one I was wearing was not “appropriate”. “I explained that I was going to an event. Anyway Rebecca barred lol.” Sign up for our free Indy100 weekly newsletter Dressed as the fictional character Rebecca from the anime series Cyberpink: Edgerunners, Kine-Chan donned the skimpy outfit before being allegedly stopped by airport security and barred from continuing to her flight. Fans have rushed to comment on her antics, many thinking she has gone too far. “Kine i love you but for the love of God... you could have put on an easy pull-up outfit, like a falling dress or even a button-down blouse,” commented Jazz. [sic] Bruno added: “THEY WERE RIGHT, YOU COULD HAVE PUT THAT CLOTHES ON THERE, THEY WERE SURE, NOT GOING TO LET YOU BOARD.” [sic] Page wrote: “AMG, it didn’t hurt to wear a dressing gown on top.” [sic] “Man I work shows and my schedule in between shows is pretty short... I'm going with my costume and ON TOP I'll put a robe or an overalls! Here's the tip for you,” said Leticia. [sic] Jam Press has contacted Navegantes Airport for comment. Have your say in our news democracy. Click the upvote icon at the top of the page to help raise this article through the indy100 rankings.
2023-08-09 17:47

Florida man captures 16-foot snake with his bare hands for Python Challenge on August 13
'I jumped on it, grabbed its head, then the thing went nuts and it turned into a wrestling match,' said Jack Cronin
2023-08-18 05:57

The Best Email Encryption Services for 2023
The first email was sent in 1971 (though it wasn’t called email at the time).
2023-09-08 04:48

How 'The Fall of the House of Usher's opening song revealed its final twist
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2023-10-15 17:52

Sarah Jessica Parker rewears iconic Vivienne Westwood wedding dress in And Just Like That
Sarah Jessica Parker showed the power of upcycling outfits in the season two premiere of And Just Like That. In this reboot of classic series Sex And The City, Parker – who plays newspaper columnist-turned-podcaster Carrie Bradshaw – rewears one of her most iconic outfits: an opulent Vivienne Westwood wedding dress. Bradshaw wore this gown in the first Sex And The City movie, when she was left at the altar by Mr Big (played by Chris Noth). In the premiere episode of the new season, the characters are getting ready for fashion’s biggest night out: the Met Gala. Bradshaw enlists up-and-coming designer Smoke to make her outfit – the theme of the night is ‘Veiled Beauty’ – but due to various blunders, the outfit she plans on wearing doesn’t fit. So, she decides to look in her extensive wardrobe for a backup option – and what could be more fitting for the veil theme than a wedding dress? Bradshaw says in the episode: “I may have something. I’ve only worn it once. It’s not the best memory.” She wears the voluminous Vivienne Westwood strapless gown with the original blue feathered headpiece, a veil, and a turquoise cape made by Smoke. Parker, 58, told People about the “complicated” process of getting the iconic dress back. “We weren’t entirely certain that we could get the dress back,” she said. “It was in London and unearthing it was complicated — getting it through customs in time and then making sure was this, in fact, the original dress? The colour looked different.” In the first series of And Just Like That, Bradshaw ended up married to Mr Big, who later died suddenly. Parker wondered how they could bring the dress into the modern era, and told People: “How would we layer it and give it a new life, and have it feel modern and change the poetry that surrounded that dress from a lot of really painful but important memories that I don’t think Carrie really wanted to let go of, especially given this loss?” She even said it was “terrifying” to put the dress on 15 years after the first movie – but it still fits. And Just Like That follows the lives and loves of three characters from the original Sex And The City series: Carrie, Charlotte (played by Kristin Davis) and Miranda (Cynthia Nixon), with new faces also joining the cast. Sex And The City ran for six series from 1998 to 2004, with two feature films released in 2008 and 2010. Kim Cattrall – who rounded out the foursome in the original series as Samantha – decided not to join the reboot. However, Variety has reported that she will make a brief cameo in the series two finale, where she will have a phone conversation with Carrie. Episodes one and two of And Just Like That series two are now available on Sky. Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live AI to be used more widely in NHS hospitals 5 French skincare secrets you need to know What happens if you don’t wash your water bottle often enough?
2023-06-23 17:25

This refurbished iPad mini 4 bundle is over $300 off
TL;DR: As of September 12, you can get a refurbished Apple iPad mini 4 and
2023-09-12 17:26

Workers Are Getting the Biggest Raises in Decades After US Labor Wins
Workers in the US are getting record-breaking wage hikes this year thanks to strategic strikes and stunning contract
2023-10-31 23:49
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