Latest news with #EpidermolysisBullosa
BBC News
4 days ago
- Health
- BBC News
Teen's skin blister disease stops her from writing and walking
A 13-year-old girl has spoken out about her rare skin condition and the "awful pain" it causes to raise from Stroud in Gloucestershire, has epidermolysis bullosa simplex (EB), which causes painful blisters on the hands and feet. On particularly bad days, she is unable to write, put her shoes on or walk, relying on a wheelchair instead."Its two main causes are heat and friction, so it gets a bit better in winter, but in summer it's really, really bad," she said. To prevent pain and more blisters, Naomi follows a daily routine of lancing her feet blisters and dressing mother, Carly, first noticed a problem when she developed blisters on her hands as she learned to crawl. "We thought, this isn't right, this is different to a normal kind of reaction to something, so we really pushed to get through to a dermatologist who then, luckily, had had training in EB, but had never seen it before," Carly said. Further tests confirmed that Naomi, then just six months old, had condition is often misdiagnosed as other skin problems such as eczema or 5,000 are thought to have EB in the UK. It is also known as butterfly skin, as the skin is fragile like butterfly wings, blistering at the slightest touch. There is currently no mother is now head of a patient support group for Debra, an EB charity carrying out research into the disease. Recalling a woman who was diagnosed in her 50s, Carly said: "She's lived in pain for all that time, not knowing what it is, being told 'you have funny feet, just deal with it'. "That's heartbreaking really, that people are told that kind of thing and aren't given the help they could get if they just knew." But she added: "[The patients] are so positive in the face of adversity and I'm amazed by them every day."
CBS News
19-07-2025
- Health
- CBS News
North Texas girl find happiness in art despite living with rare skin condition
Art has become an escape for a young North Texas girl living with a rare skin condition known as "butterfly skin," where even the lightest touch can cause pain. Through painting, 17-year-old Brianna Ibarra says she's found happiness, and now, her creativity is helping raise thousands of dollars for a special program at Cook Children's Hospital. "I have Epidermolysis Bullosa. It's a rare skin condition, with any friction my skin blisters up easily or tears," said Ibarra. Doctors say the rare genetic condition affects one in every 50,000 children. Two of her other siblings were also born with it. "It was difficult because we didn't know anything about the condition, and through the years we've been learning a little bit more about it, and it's been a little bit easier with the other kids," said Brianna's mom, Leslie Rojas. Unfortunately, there is no cure, and it's a condition that requires a lot of patience. "Day to day, it's lots of wound wrapping. A couple of hours it depends on what part of my body we are treating," said Ibarra. Brianna says when she's painting, she forgets about the stress. "It's been a blessing to see, she found something to express herself as she's very limited to things outdoors, especially. She's very sensitive to the sun," said Rojas. Brianna's passion for art has brought her amazing opportunities. Twisted X, a shoe brand out of Decatur, partnered with the hospital and selected Brianna to design a shoe. Right off the bat, the teen says she began to sketch out her ideas. "The butterflies are the diagnosis, the cactus is the pain, itchiness I get from it, the flowers are inner beauty, and the background color is my favorite color… My favorite element is the back. My name and a big flower on it," said Ibarra. The shoes are currently sold inside the hospital's gift shop and are available at several retailers across the country.
Daily Mirror
02-07-2025
- Politics
- Daily Mirror
'Disability benefits are our lifeline. Taking it away will end in tragedy'
Millions of people who depend on disability benefits were watching yesterday's Commons vote on welfare reform closely. Here six people talk give their verdict's on the government plans. The Government's welfare reforms eventually got over the line after a tense day in the House of Commons yesterday. But dozens of Labour MPs refused to back the bill - a sign of the deep unease within the party about how the changes will affect disabled people and concerns about a 'two tier' benefits system. Others watching the proceedings closely were those who depend on the state for support as they cope with serious illness and disabilities. While the rebellion forced PM Keir Starmer to reverse some cuts to universal credit and protect current claimants of personal independence payment (Pip) from stricter eligibility rules, many disabled people are still fearful about the future. Here six of them give their verdicts... Vie's story Confidence coach and children's book author Vie Portland, 54, from Hampshire, needs a stick to walk and suffers from multiple conditions including Epidermolysis Bullosa (EB) a group of rare genetic skin conditions causing extra fragile skin that blisters and tears easily; degenerative spinal disease and ADHD. She receives PIP, which covers treatments outside the NHS, special underwear and clothes because of her fragile skin, dressings and transport. She tells The Mirror: 'News that MPs aren't voting on PIP yet could be a victory for common sense, but I worry it could also be an attempt to put making a decision off and to distract us with something else. It does feel very messy. "Everyone is so at risk from going from non-disabled to disabled, due to something like an accident or a cancer diagnosis, and I am concerned for new claimants. 'What about the young people that will now not qualify for PIP, so will not be able to afford to go to university because they won't have the PIP to cover the additional costs we, as disabled people, have to pay? 'I have been a Labour supporter all of my life, yet this current government disappoints and appalls me, so I will not be voting for them until their policies return to ones that are true Labour policies - ones that don't just support privileged people.' Dena's story Dena Britcliffe, 32, lives in Kent, with partner Max, 32, a full-time carer and their five children: Mia, 13, Teddy, 12, Harlow, 8, Franky, 5 and Hallie-Rose, 4. Dena has functional neurological disorder (FND), fibromyalgia and suspected Ehlers Danlos syndromes, causing hypermobility and dislocations. Frankie has global development delay, autism and pathological demand avoidance (PDA) and is currently unable to cope with school. Dena, who receives PIP and Universal Credit, says: 'Another u-turn makes it so much more confusing for the disabled and vulnerable. Surely they should pull the bill completely until it is a better thought out plan with real life people taken into consideration. 'PIP is my lifeline – I use the financial help to pay for aids and equipment including a wheelchair and walking frame and travel to hospital appointments in London. Life costs a lot more when you are disabled. 'The new points system worries me. Assessors are not doctors, they don't have medical training and the new points system will be harsher with even stricter targets because they want to keep the costs down. The Government has treated disabled families with contempt – they have no idea what it's like to be disabled. If I didn't have PIP I wouldn't be able to leave the house, I wouldn't able to pay for all our food. 'We need a whole Government overhaul. The Government is disregarding thousands of disabled people.' Lianne's story Lianne White, 46, from Hampshire, is blind and took four years to get PIP, finally being awarded it after a tribunal. She says: ''What just happened in Parliament makes no sense. Their own MPs are telling them to pull the bill, yet they're still voting on it with none of the promised so-called concessions were an absolute joke. 'Lots of people use PIP to buy mobility aids so that they can stay in work – stripping PIP will do the opposite to what the government wants to achieve. It's going to screw up a lot of lives. "When you are blind you rely on voice operated devices and specialist computers but these are all very expensive – even second hand they cost £2,000. I can't use buses on my own – I have to use taxis if I'm by myself and they are very expensive and PIP helps towards this cost. "It's really hard to get PIP – I applied in 2021 and was declined – I appealed and it went to tribunal. I had to wait four years! "The Government is discriminating against disabled people. They are gaslighting and just trying to appease the rebel MPs. I think people will be driven to suicide if they lose PIP.' Georgia's story Georgia Bondy, 30, from East London is secretary of the Disabled People's Organisations (DPO) Forum England. She has Multiple Sclerosis and Ehlers Danlos syndrome and is often bedbound, but was refused PIP as her assessor didn't feel her condition was severe enough. She says: 'It's already an incredibly hostile system for disabled people and the Government is proposing to make it even harsher. The narrative being pedalled out is that disabled people are asking for too much, are too greedy, don't want to work.. but it's really difficult to get PIP. When I applied for PIP I was bedbound and having to crawl to the bathroom, my joints were dislocating and I was passing out. But I was ruled not eligible. 'I have very little faith that any scheme in the future. People are saying the Government has done a u-turn but it's not a u-turn, it's just to calm the rebel MPs down so they are back on side. What the Government is proposing is to damn our children to a future where many of them will be unable to buy food or pay rent if they become disabled.' Abrigail's story University student Abigail Holly, 22, from Swansea was diagnosed with cancer in 2020 – aged 16. She says PIP has been her lifeline, explaining: 'I was in my first year of college when I was diagnosed with a tumour in my finger. I had two lots of surgery to remove the tumour and had no movement in my hands for weeks. I was out of college for months. 'My life completely stopped. PIP allowed me to keep my head above the water – without it I'd have no money to get to the hospital for appointments, to buy food. It was the only thing allowing me to continue living, it was a complete lifeline. 'It's hard to fully comment right now on what the government's doing, as they're not discussing the PIP changes as such. But it's making me wonder, why aren't they? Is it a good thing or a bad thing? It's very strange and worrying at the same time.' Jamie's story Remedial therapist Jamie McCormack, 53, from Surrey, is deaf and uses a wheelchair after being hit by a car. He receives PIP, which helps with costs like hydrotherapy, an assisted trike and pain management. He says: 'After a weekend of chaos & non concessions, I'm not surprised that Starmer was forced into an inevitable last minute climbdown. The concessions are chaotic and confusing. 'What happens if you lose PIP and you have to reapply? You shouldn't be at the mercy of a decision-making assessor. 'Why is the Government putting people through all this, rather than championing disabled lives? They could do so much better.'
South Wales Argus
27-06-2025
- Health
- South Wales Argus
Barratt David Wilson Homes awards £4,500 to three charities
Barratt David Wilson Homes South Wales awarded £1,500 each to Cure EB, Bowel Cancer UK and 21 Plus through its Community Fund, which supports organisations near its housing developments. Richard Lawson, sales director at Barratt David Wilson Homes South Wales, said: "At Barratt, we are proud to support the communities where we build – not just through our homes but by supporting the people and causes that hold those communities together. "Our Community Fund gives us the opportunity to help where it's needed most – whether that's by supporting children and families through times of difficult diagnosis or funding much-needed moments of joy and connection." Since 2022, the fund has donated more than £2.5 million nationwide. Cure EB supports research into treatments for Epidermolysis Bullosa, while Bowel Cancer UK raises awareness and funds research into bowel cancer. 21 Plus supports children and young people with Down's syndrome across south-east Wales.
Yahoo
12-06-2025
- Health
- Yahoo
9-Year-Old Girl with Devastating Skin Disorder Lives in Pain: 'I Can't Play on the Playground' (Exclusive)
Zineb Laalej tells PEOPLE exclusively how she cares for daughter Tayma, 9, who has recessive dystrophic Epidermolysis Bullosa It's the most severe form of the rare skin disorder, which is often called "butterfly disease" because it leaves skin as fragile as a butterfly's wings, causing blisters, scarring, and infection "Every kid is beautiful, and some kids are different," Zineb tells PEOPLENine-year-old Tayma loves drawing flowers, playing with her brother, Arsnan, and the color pink. But unlike other kids her age, summer doesn't mean days splashing in a pool or running barefoot outside — it would cause her immense pain, her mom Zineb Laalej tells PEOPLE. 'The weather is hot, the skin is very fragile,' Zineb explains, and Tayma spends most of the summer indoors at their home in Methuen, Mass. A sunburn or a bug bite for Tayma could cause catastrophic pain. Tayma has severe recessive dystrophic EB, the most severe form of Epidermolysis Bullosa, a genetic disorder that causes Tayma's skin to blister and scar. It's the subject of Matter of Time, a new documentary featuring Pearl Jam frontman Eddie Vedder, chronicling he fight to cure the rare but devastating condition. Often called the "butterfly disease," it leaves the skin as fragile as a butterfly's wings. That's why Tayma has to wear special bandages and a thin full-body jumpsuit to protect her skin. As Dr. Diana Reusch, Director of the EB Clinic at UMass Memorial Medical Center in Worcester, Mass. — the only clinic for the disorder in the Northeast — who treats Tayma, tells PEOPLE, 'Every shower and bandage change is exquisitely painful. Every blood draw is terrifying. But she puts on a brave face every time. I am in awe watching her go through a bandage change or medical procedure. She is only 9 years old, but she is a little warrior.' Symptoms of Tayma's EB showed up shortly after birth, when a nurse brought her over to Zineb to breastfeed. Tayma's mouth was suddenly covered in blisters, Zineb tells PEOPLE. 'The nurse went to take her temperature under the arm, and her skin was removed.' Doctors whisked Tayma away to the NICU, where she stayed for 20 days. The new mom, then just 23, says it was 'scary,' spending her days sobbing as she and her husband, Tarik, waited for the news about their daughter's condition. When the family was finally was told it was EB, doctors explained there was nothing that could be done to help Tayma, other than protect her skin from the chronic blistering. Her back has the biggest wound, Zineb says. "The wound is very deep, and it's been seven years. It's not healing." Dr. Reusch explains the roadblocks to relief. 'As of right now, we don't have a treatment that can be used before a skin blister forms, to prevent the skin blisters [or] wounds from forming in the first place. We also don't have a treatment that works from the 'inside out,' " Dr. Reusch explains. There are few medications for EB, and while there are new treatments, 'we are still missing a cure." Tayma sees the doctor every two weeks, she tells PEOPLE. 'Sometimes it's bad. And it is sometimes it hurts,' she says. 'It hurts." When it hurts, she says she goes to her mom. "She just makes it better, and then she wraps it, and then it doesn't hurt anymore." Tayma's form of the disease is so severe, she needs morphine and ibuprofen to manage the pain. Bath time is brutal; creams, surgeries, and skin grafts haven't worked. As her mom explains, they can only cover her skin in Aquaphor and wrap it in bandages. Beyond the pain, EB brings other side effects, Dr. Reush explains: infection, malnutrition, squamous cell carcinoma. Some patients' fingers and toes may fuse from repeated blistering and scarring. "Everyone with EB is so different," she says, explaining that there are different types which range in severity. "Some patients with mild recessive dystrophic EB can play football, whereas other people with severe recessive dystrophic EB will blister from a hug, or rolling over in bed. "There is a serious risk of infection at any age in life for patients with EB," Dr. Reush continues. "There is a lot of variability in lifespan for patients given the variability in disease severity, and we are hopeful for improved lifespan with our new therapies. However, historically, many with severe disease pass by age 30." "Tayma's parents Zineb and Tarik are incredible human beings. They work tirelessly to give the best life they can to Tayma ... take care of her and sit with her on every hard day." But the hardest days, Zineb explains, come when people don't understand why her "social" daughter looks different. "Some kids are different," she says, tearfully, explaining that "Tayma's heart is broken when the kids see [her] and cry." "I know I can't play on the playground," Tayma tells PEOPLE, because the risk of injury is too great.. "On the outside, some kids are different," Zineb says. "Every kid is beautiful, and some kids are different ... every morning when I wake up, she says, 'Mom, give me a hug, give me a kiss.' " "Every day when I talk to Tayma, I say, 'This is strong, this is brave,' " she says. " 'This is my beautiful daughter.' " Never miss a story — sign up for to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories. Read the original article on People
