Latest news with #Ehlers-Danlossyndrome
Daily Mirror
12-05-2025
- Health
- Daily Mirror
'I got a tick bite while mountain biking – now my head is falling off my body'
Connor Edwards says his life started to deteriorate after getting Lyme disease from a tick bite while exercising, and further health complications have meant his skull is getting looser and looser A young man whose life unraveled after being bitten by a tick while mountain biking says his skull is now detaching from his body. Giving a brutal summary, Connor Edwards, 30, told us: 'I am literally bedbound/wheelchair bound with a head that is falling off. It is a pick and mix of what I wake up with but the baseline is all my joints dislocate and my head slides around and it is impossible to live this way… impossible.' Connor, who is from Cannock, Staffordshire, is pleading for help to raise money for life-saving surgery. And he said if he is unsuccessful, he will consider going to Dignitas in Switzerland to end his suffering for good. Below, we take you through how one innocent bike ride five years ago changed the course of his life. Tick bite Connor described himself as a normal 25-year-old who went out with his pals on the weekend and earned a living as a life insurance salesman. However, after battling depression, he took some time off work, and started bike riding to lose weight and to improve his mental health. This was helping him greatly and he mountain biked in Cannock Chase multiple times a week. But he remembered: 'One time I got home and I had an itch on my right bum cheek and I didn't think anything of it but the next day it was really sore so I checked and I had a tick that was embedded into me. 'I thought nothing of it and I just pulled it out… over the next six to eight months everything hit the fan.' Symptoms and diagnosis Connor's mental health rapidly declined and he started experiencing burning sensations in his hands and feet. He was eventually told he had Ehlers-Danlos syndrome (EDS) which is a group of conditions that affect connective tissue. However, his symptoms got more severe, including one psychotic episode, and his wrists started to pop out while his knees began giving way. His spine also started cracking and popping and doctors advised him to go to a physio – but he knew it was more serious than that. Fatigue and passing blood in his stool were more symptoms. He explained: 'It was getting worse and worse and worse and then one day I woke up with a really sore neck. I just did a little stretch and thought nothing of it. 'But the next day when I woke up, I literally couldn't, and I mean this, I couldn't even hold my own head up. My head felt like a bowling ball, it was that heavy. 'Overtime, within the year of that happening, my head became that loose that it was sliding around at the top of my neck and all of my other joints were getting rapidly looser and all my other symptoms were getting worse and I lost more and more quality of life until I was completely bedridden.' Convinced it was more than just EDS, Connor went to a specialist clinic in Germany two years ago, where he learned he was 'riddled' with Lyme disease - a bacterial infection spread to humans by infected ticks. He said this explained the previous psychotic episode where he said he didn't feel like a human being and his surroundings felt like a dream. 'That was obviously the Lyme disease getting to my brain,' he said. To make matters worse, Connor, as a consequence of his EDS, was also diagnosed with Carnio Cervical Instability (CCI) which involves the junction between the skull and cervical spine being unstable. As for what life looks like now while battling his various conditions, he said: 'Bed, toilet, bed, just on my phone all day in bed. It is so very bleak. Windows closed, curtains closed because I can't tolerate light. Ear muffs on because I can't tolerate sound very well on some days, even this conversation is rapidly fatiguing me.' Last hope Connor, who said a simple breath can cause excruciating bone shifts within his spine, needs to raise £100,000 for surgery abroad that would ultimately stop his brain stem from being compressed by his skull. Explaining in his own words, he said: 'My head and my neck are that loose where they connect together, and when they are that loose, the brain stem in the middle is getting irritated and bashed into and squished. 'Having that fusion (via surgery), my head wouldn't be falling off because there would be bars and rods holding my head stuck in the same place.' Fighting back tears, Connor talked about the consequences of not raising enough money for the cranio-cervical fusion surgery that would stabilise his head and neck. 'If I don't get surgery, ultimately I could die,' he said. 'Lyme disease is attacking my body. It is destroying my body and my immune system and my nervous system. 'Not only that, the Carnio Cervical Instability is progressive, my head is getting looser and looser. I mean, at the end of the day, I am trying to save my own life. 'The NHS don't treat either of these for me, they don't treat CCI, they barely know what it is.' Renowned neurosurgeon Dr Vicenc Gilete, told Connor his case was the 'most severe' he had ever encountered. And while the surgery and travel expenses would be £85,000, he also wants £15,000 to go to helping him to control his Lyme disease.
Washington Post
07-04-2025
- Health
- Washington Post
The world often judges disabled parents. What if it listened to them?
When she was younger, before she became disabled, Jessica Slice would occasionally wonder what parenthood might look like someday — how a child (or two, or three) would fit within her familiar routines, her regular morning runs, her work, her social outings with friends. But by the time she became a parent eight years ago — when she and her husband brought home their foster daughter as a newborn, a child they would later adopt — everything about Slice's reality had been transformed. At 30, she was diagnosed with postural orthostatic tachycardia syndrome, or POTS, which affects the body's ability to regulate heart rate, blood pressure, temperature and digestion; a year later, Slice would learn that her POTS was caused by an underlying genetic condition called Ehlers-Danlos syndrome, which affects connective tissues in the joints, tendons, skin, blood vessels and organs. What this means for Slice, an author and speaker based in Toronto, is that she can stand or walk for only a minute at a time. She can sit upright, unsupported, for very brief periods; most of her day must be spent reclined. Her joints dislocate easily, and she experiences nerve and motor issues in her hands. Her muscles ache constantly. At temperatures above 73 degrees, she will quickly develop dangerous heat exhaustion. Within these physical limitations, she is a devoted and determined parent to her 8-year-old daughter and 1-year-old son. Slice's forthcoming memoir, 'Unfit Parent: A Disabled Mother Challenges an Inaccessible World,' interweaves her personal experience with a deeper, researched examination of what it means to be a disabled parent in a culture that prizes individualism and fears disability. But the book also offers an illuminating perspective that applies to all parents. Disabled people have no choice but to learn how to be adaptable, and how to reject the impossible expectations of modern parenting; freed of those constraints, Slice says, their wisdom offers a hopeful new framing of what it means to be a parent. Slice spoke with The Washington Post about her forthcoming book and her thoughts on disabled (and nondisabled) parenting. The following conversation has been edited for length and clarity. Can you talk about what parenting looks like for you, how you've learned to accommodate the physical limits of your disability? So one thing is that I don't yet live in an accessible home, which is a real goal of mine, so when I'm home, I'm mostly in bed because my wheelchair can't get most places in my house. So we do more in bed than I think most parents would want to admit, and I think it's okay! I feed my kids in bed. They eat chicken nuggets in bed, my youngest has bottles in bed, I change diapers in bed. My eldest has curly hair, and her hair takes a few hours to do, and we do that in bed. As soon as they wake up, they both get in bed with me. Maybe it's my own insecurity, but there is this sense that doing things in bed is lazy or halfway — but I think my kids feel really safe and cozy in bed with me. I just have to wash the quilt a lot more often. How have your kids adapted to this? I'm noticing with my 8-year-old, she's really willing to mention when something doesn't work with her. And I think that's because there is a sense in our family that it's okay if you can't do something. And often her limitations are more emotional limitations, but I'd like to think that I've set an example of it being okay to be limited. I think she's learning really important skills about empathy. When we go out the door, the three of us, she puts him in my lap, she opens the door, she turns around and locks it behind us. She is part of the team getting us out of the house. Oh — and she does Legos all the time, and whenever she builds anything, it always has a ramp. Even if the thing is, like, a dinosaur spaceship, it will have a ramp going up. You write about the ways that parenthood — starting from the very first weeks parenting a newborn — are perceived very differently between disabled and nondisabled parents. Can you talk about that? I had planned on just writing about the difference in experience between the two groups, but then I did a few interviews, and I was so surprised that nondisabled people had a much harder time adjusting to parenthood. At this point, I've interviewed about two dozen disabled parents and two dozen nondisabled parents. Nondisabled parents described those first weeks as profoundly destabilizing, one of the most harrowing times of their lives; it made them wonder if they could handle it. And all but one disabled parent said, 'It was okay! It was fine!' There were wild stories, too. [One woman,] Jessie Owen, had twins, and she's quadriplegic, she had high blood pressure giving birth, and she kept having to go back to the hospital after the delivery — but she was completely unfazed by it. She was like, 'It wasn't bad!' So I was like, what is happening here? It can't be that the only answer is that you need to be disabled in order to adjust to parenthood. So what do you think is at the root of that difference of experience? I do think that disability has a lot of overlapping skill sets with caring for a newborn. The familiarity with a very precarious and fragile body, and the need to put physical demands right at the top of the priority list — that's often part of disability. Plus, a lot of problem-solving. And then I think another huge part of it is that, as a society, we're taught to fear disability. And labor and delivery is sort of an automatic relationship with temporary disability, and often people aren't expecting that. They have a baby, and they're temporarily disabled, and they're taking care of a baby, and in many ways a baby is like a disabled person. There's disability everywhere, and society has been telling you for decades that this is a terrible way to live. So for nondisabled people, there is this fear. A lot of people I spoke to described that there was this feeling of their bodies being weak and unpredictable that hit at something primal and core in them. You talk a lot in this book about capitalism and consumerism-driven parenting, and how that can be 'suffocating' for all parents — how does this look different from the perspective of disabled parents? I was cautious to talk too much about capitalism, but there was no avoiding it because the fact is that consumerism and parenting are pretty bound up together. But what can be freeing about disability is that so much of the product choices are not available to disabled people. Our crib choice is what we can get our child in and out of. Whatever car seat is light enough to carry on top of your wheelchair. In my case, I don't use a stroller at all, I have a $30 Velcro strap that a friend added additional fabric onto, so that I can have my infant on my wheelchair. The disability mindset is to take a step back and say: Actually what do I need? What is the reality of my body or my life? If I can admit that no product can insulate us from discomfort or pain, what is the best way forward? That is the disabled wisdom. What you shared about being a disabled parent in public was really striking. Can you explain why that experience can feel so scary and vulnerable? Parenting in public as a disabled person is hard because people often have opinions — and I think all parents are used to people in public having opinions, but when you're disabled, there is the added threat that a disproportionate number of disabled parents lose custody of their kids, so that commentary has an added weight. I think when a nondisabled person sees a disabled person parenting in a way that feels unfamiliar, it's like — 'That doesn't seem safe,' and that's because we want so badly to know what safe is. In an ableist society, you can say, 'Well, if that is wrong, then I don't have to worry about my own safety because at least I'm not doing that.' But it's just a distraction from this thing we all share, which is that we're doing our best, in public, and everything is a choice. What can nondisabled people do to better be aware of that dynamic, or to offer support? Thinking about access on a disabled person's behalf can feel so nice. When one of my kids' friends' parents says, 'Oh, I looked into the access and there is a ramp, but the bathroom's down some stairs, what can I do to make it more accessible?' or 'I called ahead and this one hallway might be too narrow for your wheelchair' — I'm just constantly doing that work, so when anyone takes some of that work on, it feels really loving. Circling back to this looming threat of losing custody, can you talk about the relationship between Child Protective Services and disabled parents? I really thought the concerns about CPS were overstated. But then when I started to research and interview, I was like, oh, these are understated. Because disabled people are often poor, they have a lot of interaction with government services, with Social Security, with Medicaid, and in each of those contexts, the person they're interacting with is a mandated reporter. And most mandated reporters are not disabled. And so you have a nondisabled person in the position of judging the fitness of a disabled parent. And also, the reliance on services and the need for help is itself considered a red flag. Even though every parent needs so much help — it's just that people with money can pay for that help. But the result of all of that is that disabled people lose custody of their kids a lot. But it isn't possible to get a good statistic because, for all sorts of complicated reasons, parents' disabilities aren't tracked in a national database of child removals. There is a really profound idea at the heart of this book — that ableism is born of a fear of need, and a fear of death. How do we begin to rewire that way of thinking? I think about the fear of mortality a lot because I really think the way I lived before becoming disabled was just this manic attempt to ignore my own fragility and my own mortality. And when I became disabled, everything I was working for was no longer possible. I went from being a business owner and a runner and out with friends most nights of the week, and within a few months I was in a one-bedroom apartment watching Lifetime shows with my sister, with no income. I grieved, and then I accepted my body. And then I found other people who are also disabled. I started reading a lot more poetry. I think what I found is that, actually, all it took for me was telling the truth. What it took was having to sit still and admit: I am afraid of losing people I love, and I'm afraid of no longer being alive. But the miracle of life is that we want to be here, and we want to be with the people we love, and we know it will always end. And we cannot eat or exercise or cold plunge or work ourselves away from that reality. There is so much happening politically right now — the Americans With Disabilities Act is under threat, there are cuts to medical research and the Department of Education, and so many other imperiled programs and services that are vital to disabled parents and families. What do you hope that people might take away from your book especially in that context? I think that a tendency we all have with politics is to think of ways that whatever is happening has nothing to do with us. To think that it could never be our loved one who was sent to El Salvador, or that I would never be caught at a border crossing, or that we wouldn't lose our Social Security income. To feel like there's some distance between us and current events. That's the same distance of thinking there's an immovable line between us and disability, between us and fragility. So I think that the first step is the same as when we're thinking about disability — that this is actually happening to all of us, and there is nothing special about me that will insulate me from injustice or pain or suffering. I have no idea how to change everything. But at the very least, you have to tell the truth, and go from there.
The Guardian
16-03-2025
- Business
- The Guardian
Labour's long-term benefit reform plan is laudable; putting a moral slant on it is not
'The assessment process itself is awful'. Carol Vickers receives the personal independence payment (Pip), the disability support benefit whose spiralling cost the government is determined to cut back. She has a debilitating condition called Ehlers-Danlos syndrome that affects her connective tissues, and means she needs an assistance dog. I spoke to her this week, to get a sense of how those at the sharp end of the looming reforms may be feeling. The work and pensions secretary, Liz Kendall, has insisted the government didn't 'start from a spreadsheet,' when drawing up the plans; but officials privately make no bones about the fact that they did have a savings target. Cutting £5bn from the welfare bill will help Rachel Reeves to meet her self-imposed fiscal rules – and the row over welfare is likely to be the first of many battles, as she looks for further savings in June's spending review. 'They are coming at it from completely the wrong angle,' argues Vickers. 'It's almost as if they're trying to tackle the outcome, not the root causes.' Pip is paid regardless of whether the recipient is in work. Vickers says the £100-ish a week she gets on the lower rate doesn't meet the extra costs of coping with her condition, which she reckons are about £1,000 a month – but helps her to stay in her job, in the education sector. She also has a small craft business, making jewellery. 'To an extent, it's helping keep me in work,' she says. 'The fact I can run my 13-year-old car means I can keep my job; the fact that I can pay for my assistance dog, keeps me independent.' Reports this weekend suggest Kendall may withdraw plans to freeze the value of Pip next year, after a cabinet backlash; but the intention still appears to be to make it much harder to claim. Yet like many others who engage with the system, Vickers says it is already 'degrading'. 'They approach it as if you are a liar or you're trying to play the system somehow, when all you're trying to do is stay in work or stay as a contributing member of society'. As well as cutting the bill for Pip, which is projected to soar to an eye-watering £30bn without intervention, ministers are expected to reduce the amount paid to the 'limited capability for work related activity' (LCWRA) group of universal credit claimants. These people, judged too sick to be in a job, receive an extra £416 a month on top of the basic universal credit payment – more than doubling it for a single person under 25 – and do not face the threat of having their benefits deducted if they fail to carry out work-related activities. Experts say the gulf in generosity between the basic level of UC and this group, may have helped contribute to the sharp increase of claimants in recent years, by making it more worthwhile to jump through the requisite hoops. But given charities say the basic rate of UC is all but impossible to live on – the Joseph Rowntree Foundation says five out of six households on UC are going without essentials such as heating or food – it seems unlikely the main problem here is that LCWRA payments are too lavish. And recent research by the Learning and Work Foundation said that the DWP tends to leave most disabled claimants with little or no practical help. Kendall and her DWP colleague, the employment minister Alison McGovern, are keen to change that. Sign up to Business Today Get set for the working day – we'll point you to all the business news and analysis you need every morning after newsletter promotion Even in opposition, McGovern was an enthusiast for the kind of devolved, bespoke back-to-work schemes that can make a real difference to people's lives – but require investment of time and resources. I visited one such project with her in the Welsh seaside town of Rhyl, where Luke, who had been too shy to leave the house, was serving up lattes in the local cafe. In the Whitehall wrangle, Kendall appears to have won the right to reinvest up to £1bn a year of the savings DWP hopes to make, in funding more of this kind of approach – as well as a 'right to try,' so that claimants can start a potential job without immediately losing benefits. This is the only acceptable version of the argument, made repeatedly by ministers in recent days, that there is a 'moral case', for welfare reform: that it is indefensible for so many people to be left on the sidelines of society. Yet when the public hear ministers suggest there is a moral case for cuts, it conjures up all the guilt and shame-laden Tory language of scroungers and shirkers. Kendall explicitly rejects those words; but painting a veneer of morality over cuts, risks people like Vickers, who may now face a tougher battle to get support, feeling the government thinks they are a moral problem. 'I almost feel like they're picking on the people who are too tired or sick to fight back,' she says. Moreover, Labour face any number of other pressing problems – social care, child poverty, court backlogs – but have chosen to put a moral slant on the one in particular they hope will save them £5bn. Reforming a system that leaves too many people on the scrapheap, in a way that should save money over time by helping many back into work, is absolutely laudable. Coming over all moral, and especially about a plan to make swingeing upfront cuts that will leave many people fearful about losing the support they rely on? Not so much.
CBS News
12-03-2025
- Health
- CBS News
Felix Varela Senior High student goes from debilitating disease diagnosis to defying odds in sports
It was just four years ago that a Felix Varela Senior High School senior went from being diagnosed with a debilitating disease to defying odds through sports. Sofia Motta might look like an ordinary student athlete, but the Felix Varela senior is actually dealing with an almost invisible disease. "I was almost wheelchair-bound," Motta said. "I had a lot of people not believe me that I had this because they don't know what it is, they're not familiar with it. But her disease, while rare, is very much real. It's called Ehlers-Danlos syndrome, a genetic condition that makes her body's connective tissues weaker, including her joints. Diagnosed at age 13, Motta decided she wouldn't let EDS control her life. "Not taking care of my body, I could risk a lot more things, faster," Motta said. "So I decided to join as many sports as I could - I tried out for soccer, decided I wanted to become a trainer, to look at the joints themselves, work with all of the muscles." Motta is also on her school's wrestling and flag football team - she knows she has to work twice as hard to build muscle, to be strong enough to be on the wrestling mat. Despite all the extra work though, she wouldn't have it any other way. "Now, I'm able to do things that I never thought I was able to do because I went from putting on a seatbelt in the car, my shoulder came out of place, to now I could go to tackle or jump up for the football and it's still stable," Motta said. "There were a few times when you see her trying to do her moves and you kind of squint, but [it's] her mindset I believe that got her to all the things today," said Felix Varela Head Wrestling Coach Eric Hughes. Sofia didn't stop there: Jumping to create a nonprofit organization called Motta's Helping Hand, providing kids with other invisible diseases with blankets, stuffed animals and more. "So I was like, what about those young kids that they try to say something that they're feeling pain and people don't believe them, how do they feel?" Motta explained. "Because I was 13 at the time, I felt terrible so I can't imagine what younger kids were feeling." "l think it's amazing for someone with that disease but she also helps everyone else around her and she doesn't really bring it up but she also gets what she has to get done and she's still active in sports," said Motta's wrestling teammate Jordan Pineda. While Sofia was the first to be diagnosed with EDS in her family, her mother and two younger siblings discovered they also had the disease. She encourages them not to let it control their lives either. "So I told them, 'try these sports, try running, I know it's going to hurt at first - it will, I'm not going to lie, it will hurt at first but I promise you'll get through it and you'll feel amazing after, you'll be proud of yourself and everything' and they're working towards it, so it's amazing," Motta said.
