Latest news with #Ehlers-DanlosSyndrome
Metro
4 days ago
- Health
- Metro
More than 100,000 people sign Scope's petition against government disability cut
Volunteers from learning disability charity Scope today handed a petition to the government with the voices of 100,0000 people opposing the cuts to welfare and PIP. Today, members of the charity gathered at Downing Street after receiving the backing of people across the UK and the disabled community. In March, Labour announced plans to save £5bn a year by overhauling the welfare system, plans which have been called 'barbaric' by campaigners. Volunteers for the charity included Rachel Batton, 53, from Cardiff, who, if the government papers are given the green light, her PIP cuts would be halved. She told Metro she was 'really scared' about the future and in 'constant stress waiting on tenterhooks' awaiting what cuts the government is going to make. Rachel has classical type EDS (Ehlers-Danlos Syndrome). EDS impacts Rachel by causing joint and muscle pain, easy bruising, frequent dislocations, and severe fatigue. She also has Multiple Sclerosis (MS), which further affects her mobility and fatigue. She said she felt 'resilient' but that there was a 'black cloud' over her everyday. She said: 'You feel like you're walking through treacle, just because your symptoms are getting worse and things and your pain is getting significantly worse. 'I can't remember a time when my pain was as bad as this, because I'm stressing about it every single day.' Rachel receives Personal Independence Payment (PIP) at the enhanced rate for daily living and the standard rate for mobility. Without PIP, Rachel would not be able to afford to manage the extra costs she is faced with. It's like, it feels like this is a tick box exercise, and the decision has already been made, and they're not going to change their mind but we've got to try.' 'It's like, it feels like this is a tick box exercise, and the decision has already been made, and they're not going to change their mind but we've got to try.' Rachel has a number of disability related extra costs and the amount of money she is about to receive from the government is going to be halved, she said. She needs frequent hot baths and consistent heating to manage her symptoms. Fatigue and mobility issues make food preparation difficult, so she relied on more expensive pre-cut ingredients and ready meals Scope said in the petition: 'Needing more financial support is not a choice. Disabled people often live in pain and in fear of losing vital support. 'After years of rising prices, many disabled people are already on the brink. Cutting disability benefits will deal another catastrophic blow to disabled people's lives.' Jessica Leigh, campaigns manager at disability equality charity Scope, said: 'We're here to urge the government to drop these catastrophic plans to rip billions from the welfare budget. 'Life costs a lot more when you're disabled, and these cuts will have a devastating effect on disabled people's health, ability to live independently or work, as in Rachel's case. 'Without PIP, she won't be able to afford the things she needs to manage her conditions and the pain which comes with them, meaning she could no longer be able to work. 'The government must listen to disabled people and change course.' Last year, Scope research found that on average, disabled households need an additional £1,010 a month to have the same standard of living as non-disabled households. If you want to find out more information about the petition visit: Get in touch with our news team by emailing us at webnews@ For more stories like this, check our news page. MORE: Jamie Vardy next club odds: Striker will be in demand after leaving Leicester and could head north of the border MORE: 'Monster' 18ft python rescued along with three others after being found dumped in woods MORE: Astrid & Miyu launch unmissable summer sale on jewellery for a limited time only
Irish Independent
03-06-2025
- Health
- Irish Independent
Young Kerry woman raising awareness of rare and often hidden condition in first solo exhibition
Christina O'Hara, a young artist from Beaufort, said her exhibition consists of a deeply personal body of work that explores life with Ehlers-Danlos Syndrome (EDS). EDS is a rare condition affecting the connective tissues which support internal organs, bones, tendons, ligaments, blood vessels and bones. Studies suggest at least 6,250 people have a type of EDS or Hypermobility Spectrum Disorder (HSD), another connective tissue condition, in Ireland, according to the Ehlers-Danlos Society. Christina's showcase is titled 'Fragmented Connections' and it portrays her internal experience of living with a connective tissue disorder. The artist, a Fine Arts graduate currently studying Arts Management in the University of Galway, said her exhibition blends visual art with advocacy. She has described her installation as 'a window into the connections between found materials and my internal experience of fragmented connections.' 'Through mixed media and process-led work, I aim to give form to the invisible symptoms of chronic illness, while sparking conversation around what it means to live with a hidden illness or disability,' Christina said. 'As part of the show, I'm also inviting the wider community to engage with EDS awareness in creative and accessible ways, and I hope it will resonate with others navigating chronic illness and hidden disability. 'As someone from the local community, it means a great deal to me to share this journey and hopefully create a more understanding space for others living with hidden illness/disabilities.' Among the works featured at the exhibition is an image piece titled 'Circumnavigating a Subluxed Reality'. It represents the artist's light-hearted, abstracted journey to find the beauty in her fragile internal experience. 'Fragmented Connections' opened at Siamsa Tíre Tralee on May 22, during Ehlers-Danlos Syndrome Awareness Month, and the installation will run until Saturday, June 7.
Buzz Feed
31-05-2025
- Health
- Buzz Feed
Medical Conditions Found After Others Noticed Symptoms
Ever thought something was perfectly normal about your body, only to find out it's actually a medical condition? You're not alone. Recently, we asked the BuzzFeed Community to share medical conditions they didn't know they had until someone else pointed out a symptom — and their stories prove that sometimes, the most important medical observations can come from the people around us, not only doctors. Here are some of the most eye-opening responses: "I know it's a common issue, but I had a friend say he thought I was depressed. I thought, I'm not sad, therefore I'm not depressed. It took me years after that comment to learn he was right and seek help. Now I'm happily on antidepressants and doing so much better than before." —madds2016 "One of my friends posted about her recent Hashimoto's diagnosis and shared an infographic with a list of common symptoms. I ran down the list and found myself checking a lot of boxes. I went to my primary care doctor shortly after to have labs run, and sure enough, I had the exact same condition! That friend indirectly saved my life in a way." "When I was in college, I mentioned to a teammate on my cross country team that I couldn't sleep because my mind would race — just so many thoughts that kept me up. She suggested I had ADHD. My twin brother has it, and it's genetic. He was diagnosed around age 6 or 7. I was 29." "Now I'm medicated and sleep like a rock (mostly) every night."—madds2016 "Since I was a teen, I'd tell people I was allergic to the cold. My skin would get super itchy and come out in blotches and dry patches. Everyone laughed when I said I was allergic to a temperature. I'm 31 now. Two years ago, I went to the doctor for something unrelated. He saw the patches on my skin and immediately diagnosed me with psoriasis, an autoimmune skin disorder. And guess what? Cold temperatures make it worse." "Hormonal dysfunction. I'm a woman who, since puberty, had severe acne and heavy periods — like changing a pad every two minutes. I also needed way more food to feel full. I went to a gynecologist at 15, but he said it was normal, so I believed him. When I was in my 30s, my mom saw my (very hairy) unshaven legs and said, 'THIS is not normal!' We ran tests. Turns out, I had way too much testosterone. For reference: Women's levels should be between 0.08 and 0.48. Mine was 0.54." "I'm now on birth control and life has never been better. I never realized anything was wrong because it had always been that way — the periods, the hair, the acne, the appetite. I even thought I just didn't have a waistline. Nope, it was hormonal weight gain. I have one now."—mudda8139 "Autism. Everyone said my son was just like me when I was little. He had already received an autism diagnosis, so I had myself tested too — and I'm autistic as well." "Ehlers-Danlos Syndrome! I had someone gently suggest that I get checked out (after years of unexplained symptoms) and boom, I was a textbook case." "ADHD. I didn't know I had it until my daughter was diagnosed as a teenager. We were discussing her symptoms, and I realized, 'Hey, that sounds like me.'" —abourque "I thought everyone had TV static vision. Nope. Turns out I just have Visual Snow Syndrome. I figured it out when I randomly read an article about it, and I was like, 'Hey, wait a minute…' It was like the internet pointed it out to me." "My wife and I did foster care for 10 years. When one of our foster kids came through with severe food insecurity issues, my wife explained all the signs we needed to watch for. As she went through the list, I realized I had all of those issues myself. My wife inadvertently diagnosed me with food insecurity from my childhood." "I was having really bad back pain from an unrelated injury, and during an X-ray, the medical team noticed spots on my lungs. At first, they thought it was lung cancer, which scared the crap out of me. After a lung biopsy, the doctor showed me pictures of my bronchial tract and said, 'See all those white dots? That's supposed to be pink.' Without that observant radiologist spotting something completely unrelated to what I came in for, I might never have known I had sarcoidosis." —abourque "I always thought I was allergic to my own sweat and working out, since I would break into hives! I didn't know what was happening until a medical professional diagnosed me with spontaneous urticaria — an autoimmune issue where my body produces too much histamine. It turns out I'm triggered by sudden temperature changes, not sweat. If it's a really hot day and I jump into the ocean, I'll break out. If it's a cold day and I'm wearing a coat but my legs are exposed, my legs will break out! I have to get injections every month." "When I was younger, I had some GI issues. The radiology reports showed my appendix was on the left side due to genetic malrotation of the colon. The doctor didn't bother telling me, but I overheard him tell his nurse. A few years later, I had pain on the left side and they suspected chronic appendicitis. But when they did surgery, the pathology reports showed my appendix had endometriosis." "Many years ago, when I was experiencing severe migraines, I had several scans done on my head to rule out any internal cause. When the results came back, the doctor asked if I had ever hit my head and lost consciousness. I said no, not that I recall. Apparently, I must have had some kind of brain trauma I don't remember, because they explained that my right frontal lobe was atrophied. The migraines eventually went away on their own, but that doctor's observation about my brain explained a lot about my impulse control issues that I never understood before." —christines442ed4b4e "I had what they call 'silent' endometriosis. It's far from silent now, but I had absolutely no symptoms for years. I only found out because a surgeon discovered it unexpectedly when I went in for a completely unrelated procedure to get my tubes tied." Have you ever discovered a medical condition after someone pointed out a symptom you didn't realize was unusual? Share your story in the comments below! And remember, if someone's ever pointed something out, or if something feels off to you, it's always worth asking questions. You never know what you might uncover.
Scotsman
27-05-2025
- Health
- Scotsman
Edinburgh artist fundraising for wheelchair access as some users 'fall through net' of care
An Edinburgh-based artist is fundraising for a new wheelchair that would allow her to work more independently around the city. Sign up to our daily newsletter Sign up Thank you for signing up! Did you know with a Digital Subscription to Edinburgh News, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Shae Morgon is a 35-year-old artist from Gilmerton in Edinburgh. Five years ago, cancer treatment accelerated an existing degenerative condition called Ehlers-Danlos Syndrome (EDS), leaving Shae, who was also diagnosed with Functional Neurological Disorder in 2016, wheelchair bound. Shae Morgon was left wheelchair bound after cancer treatment five years ago | Shae Morgon She believes that people like her, who are ambulatory wheelchair users, are 'falling through the net' in the care provision that they are receiving - with 24/7 wheelchair use a stipulation for receiving funding. Advertisement Hide Ad Advertisement Hide Ad Shae said: 'Scottish Government guidelines say that to qualify for things like funding for a powered chair, you have to be fully 24/7 reliant on your wheelchair, and if you can stand and take even a couple of steps, you don't qualify.' 'So a lot of people with conditions like EDS, who are ambulatory to a degree, are falling through the net, and that's why we're having to fundraise and do things privately.' Shae is a contemporary artist from Gilmerton | Shae Morgon Now Shae is fundraising through GoFundMe to raise enough money to purchase adaptive wheels and batteries that will propel a manual wheelchair. It is the latest in a series of challenges she has faced as she studies HND Contemporary Art Practice at Edinburgh College. She explains: 'There has been a lot of learning curves on how to accommodate a wheelchair user in the studios, so I've had my space built to accommodate the stuff that I need. The issue I'm facing at the minute is I'm doing an art piece in a building called The Gatehouse, which is part of the Edinburgh College campus next week, but there's no ramp into it. Advertisement Hide Ad Advertisement Hide Ad 'There's only a temporary ramp, which someone has to come and put down, which means I can't work in there independently. It's just because these things have never come up, I'm the first one to encounter these problems and try and work with the college to find solutions.' However, the challenges are not just limited to college campuses, with the city itself being difficult to navigate at times. Shae said: 'It's so common, especially around Edinburgh. I'm working on an art project at the minute and photographing all the places in Edinburgh when I'm out with friends, and I'm like, 'oh, we can go in here', and then there's a step, but there's no access, and I can't go to these places.' Shae said that parts of her life are on hold until access improves across the city, and she is having to adapt how she approaches getting around, including getting a lighter chair. Advertisement Hide Ad Advertisement Hide Ad Her fundraiser was launched earlier this month and she has raised more than £400 of the £5,300 that she needs. Much of that has come from fellow students who Shae said see the challenges she faces every day. She said: 'The initial response was really good. A lot of it has been my classmates who have been really supportive. And they can see how having this equipment would make my day to day life in the studio easier, and all these things. They're around me all the time, and see the challenges that I kind of face.' You can donate here.
Yahoo
23-05-2025
- Health
- Yahoo
Two Real Brides on the Challenges of Planning a Wedding with Migraines: 'It's Added Another Layer of Stress'
Wedding planning can be stressful. Between finding the perfect dress, choosing a venue, and wrangling guest lists, even the most laid-back bride can feel overwhelmed. But for brides living with chronic illnesses like migraines or autoimmune disorders, that pressure multiplies. What's supposed to be the happiest time of their lives often becomes a constant battle between what their bodies can withstand and the demands of the day. Anna Konstantopoulos, a graduate student getting married in 2025, knows this struggle intimately. Diagnosed with Ehlers-Danlos Syndrome (EDS) at 15—a genetic disorder that affects connective tissue and, in her case, causes chronic migraines—she's spent the past decade learning to manage symptoms that don't always follow the rules. 'People confuse [migraines] with headaches and think, 'Oh, it's just a bit of throbbing in your head,'' Konstantopoulos says. 'But for me, they always occur on the left side of my head and feel like a stake has just been driven through my left eye. I cannot stand any light or any sound. I just have to lie in a dark room.' Mikaela Agnolin, a Miami-based real estate agent and another bride-to-be, knows that pain well — she's been 'dealing with migraines for about five years.' For her, it feels like 'a dull ache behind my eyes that builds into a throbbing pain on one side of my head. Sometimes it feels like a screwdriver is being drilled into the sides of my head.' Living with an invisible illness like migraines often means being hyper-aware of one's body. Konstantopoulos, for instance, keeps a Google Sheet full of her triggers, which help her try to manage the unpredictability of when a migraine might occur. But even the most careful preparation can't guarantee relief. Migraines can come on suddenly, and even the mildest ones leave both women unable to function. 'Even the weakest ones I've had, I still can't do anything,' Konstantopoulos says. Her most severe episode lasted nearly two months and left her bedridden. 'I had to drop out of school and was homebound. I could barely function,' she says. Agnolin had a similar experience. She remembers having to leave her job after her illness started impacting her professional life. 'I've had a few major instances at big work presentations in front of crowds that led to me having to stop in the middle of the presentation, which for me felt very embarrassing to explain,' she shares. Despite the inherent challenges of their conditions, both Konstantopoulos and Agnolin are determined to enjoy their wedding days. But living with chronic illness means making accommodations and adjusting every decision to reduce the risk of a flare-up. That includes choosing a venue with soft lighting, scheduling moments to rest throughout the day, and briefing the bridal party on what to do if a migraine strikes. It also means taking steps weeks before the wedding to prevent a flare-up. 'I need to be extra cautious about the food I put in my body, eat, avoid strenuous exercise, and keep extra hydrated,' Agnolin says. Konstantopoulos echoes this, adding that she's going to be focused on prevention and being very clean with her diet leading up to the wedding. And if she does have a migraine on her big day, she'll try her true-and-tried methods like eating sour gummy worms (she swears it works!) or wearing an ice pack. If it gets too bad, she'll go to the ER and get a migraine cocktail. Ultimately, though, when it comes to migraines, there's only so much you can do. 'They're generally one of those things you don't have any control over,' Konstantopoulos says. 'It's not something that's just mind over matter.' That's why being open about migraines is important. Agnolin says she often feels guilty when her illness forces her to cancel plans or miss out on key moments. 'There's a lot of guilt and shame because you feel unreliable when you have to cancel, and I wish more people understood the invisible toll migraines take on your life and relationships,' she says. "I have to think ahead about lighting at the venue, how much downtime I'll need before the wedding, and how to manage overstimulation during the event," Agnolin adds. "I've also had to say no to some pre-wedding events to protect my energy. It's added another layer of stress." Just like any bride, there's a lot that goes into one of the happiest days of your life — and having the support of friends and family through unpredictable moments is key to a memorable day, no matter what happens. Read the original article on People
