Latest news with #EhlersDanlosSyndrome
BBC News
2 days ago
- Health
- BBC News
Seaford woman on solo British Isles sail feels 'unstoppable'
A terminally ill 26-year-old woman on a solo sail around the British Isles says her first days have included "brutal" times but also feeling "unstoppable".Jazz Turner, an engineer from Seaford, East Sussex, lives with Ehlers Danlos Syndrome, a debilitating genetic condition that affects connective tissue, meaning she is a full-time wheelchair set off from Brighton on Monday, starting off the the 2,070 mile (3,331km) trip which she hopes to complete within four to eight weeks."To say I'm soaked through and exhausted would be an understatement," she said. Ms Turner said the first few days had been "incredibly brutal", with "insane winds" and "big seas".But she said: "Sailing has this way of, just when you're ready to give up, go back to the marina and back to shore, that's when it pulls out a sunset or the stars."So those have been my highlights."Significant breakages in her first days included dropping a winch handle on and cracking the screen of her chart plotter, which she described as the "brain" of her also had leaking windows, water tanks breaking free and soaking everything inside the cabin, and a broken magnetic compass which communicates with the chart she said: "The times where it's just me, the boat and the stars above us, it feels like we're in our own little world, totally unstoppable." Ms Turner was diagnosed with the illness, which causes fainting and seizures, when she was to complications, doctors have told her that her condition is now journey on her boat – named Fear! - will raise money for Sailability, a charity that enables people with disabilities or who come from a difficult background to get into sailing. 'Sailing further from loved ones' Though she has been building up to the sail for eight months, she said in some ways the journey still did not feel real yet."I still feel like I'm going to turn around and head back to Brighton marina at any point," she said."The main difference is I guess I miss people more, knowing each sail, each mile takes me further away from those I love. It's hard at times."Ms Turner said she had not expected the amount of support from those who have been tracking her sail and sending her messages."It's been a hard start and knowing I've got all that support has been invaluable and has carried me through each of the crappy times when a wave has soaked me again," she said.
BBC News
4 days ago
- Health
- BBC News
Terminally ill sailor from Seaford sets off solo around the UK
A terminally ill 26-year-old woman from East Sussex has set off on a solo voyage sailing around the British Turner, an engineer from Seaford, lives with Ehlers Danlos Syndrome, a debilitating genetic condition that affects connective full-time wheelchair user left Brighton Marina on Monday on the 2,070 mile (3,331km) trip she hopes to complete within four to eight said was feeling "nervous and excited" and was hoping to become the "first disabled person to undertake a solo and non-stop circumnavigation of the UK and Ireland". Ms Turner was diagnosed with the illness, which causes fainting and seizures, when she was to complications, doctors have told her that her condition is now told BBC Radio Sussex: "I'm just looking forward to getting out there now."It has been a long time coming."Despite not being able to swim and being prone to seasickness, she has previously represented Great Britain in para-inclusive sailing events. She said: "The worst part about it is when there is no wind."I can't use my engine as part of the record attempt. "So when there's no wind I go wherever the tide wants. Drifting is really hard to deal with mentally when you want to be making progress."Ms Turner is raising money for Sailability, a charity that enables people with disabilities or who come from a difficult background to get into sailing.
Daily Mail
27-05-2025
- Entertainment
- Daily Mail
Sports Illustrated Swimsuit model reveals how breast reduction surgery helped ease chronic health condition
Sports Illustrated model Gigi Robinson has detailed how her breast reduction surgery has helped with her chronic health condition. Gigi, 27, explained she had a breast reduction to help with her debilitating pain due to Ehlers-Danlos syndrome. 'I was diagnosed with hypermobile Ehlers-Danlos syndrome at around 10 or 11 and that was really challenging,' she told The New York Post. Ehlers-Danlos syndrome is a group of rare genetic disorders that affect the body's connective tissues including skin, joints, and blood vessels, per NHS. It is usually marked by overly flexible joints, chronic soft and stretchy skin that can easily bruise, frequent joint dislocations, and chronic pain. 'I grew up with chronic migraines, chronic fatigue, pain, brain fog — a lot of different symptoms — and by the time I got to college, I really realized how much of an impact living with a chronic illness had on me,' she shared. The swimsuit model said the surgery 'was never a cosmetic thing.' 'My goal was not to get a breast reduction to be smaller or to lose weight,' she explained. The model, who was a Sports Illustrated Swim Search finalist in 2022, had the surgery to reduce her size from a 34E down to a 34B (post-surgery) 'My goal was rooted in my desire to overcome chronic illness.' Gigi said she fits into size 4 or 6, but had to size up to a 10 or 12 just to fit her bras under her clothes pre-surgery. The model, who was a Sports Illustrated Swin Search finalist in 2022, had the surgery to reduce her size from a 34E down to a 34B. 'I could not exercise without a lot of pressure in my neck and my shoulders and my back,' Gigi said. 'And getting imaging and trying things like acupuncture and cupping, cold plunge, sauna — all those things have helped me with my pain and fatigue, but it was so specific to my upper abdominals and upper body.' In 2022, the model had surgery to help with her chronic pain and switched to an organic diet, but her neck and shoulder pain still lingered. 'That's when I really made the decision to go forward and consider a breast reduction,' she detailed to the outlet. 'I had three or four different consults and all the doctors said, "We think you could benefit from this." 'And I think the only regret I have — like many other women — is I wish I did this sooner.' When she had the surgery earlier this year, Gigi said doctors told her they were unsure what size she would be after the procedure. 'They have a certain amount of tissue that they have to keep alive and keep in order to make your body still function the right way,' she explained. 'But what she can confirm is that 'things fit way different than they used to — in a good way.' In January, she confirmed her size was now 34B in a before and after TikTok video. 'The 34E to 34B shift is wild to me. I'm so happy. Can't wait to be on this journey with you,' her caption read. In the clip, Gigi wore the same work-out set before and after the surgery to show the difference. After the surgery, the model wanted to share a message for people who think that if you want a breast reduction, you should 'just lose weight.' 'You have to think about the limitations that people living with a larger chest and/or a chronic illness may be suffering,' she said. 'Losing weight is not necessarily a great option. It also perpetuates the idea that you're getting a breast reduction because you wanna be smaller.' She also wanted to be transparent that the surgery was only a two- to four-hour outpatient procedure. 'The doctor comes in marks you up with a sharpie and shows you kind of where he's going to cut — my doctor said, "It's like we're doing origami, but with your boobs" and then you go into the room, and then you wake up in the outpatient room and obviously you are coming out of anesthesia so you're a little loopy,' she shared. Gigi said the drains on the side of her breasts, which are small tubes in the incision site to drain liquid - were the only painful part. Though she admitted 'the first week was hard,' she felt fine after the first five days.
BBC News
27-05-2025
- BBC News
Terminally ill Seaford woman to sail solo around the UK
A terminally ill 26-year-old woman from East Sussex is preparing to set sail around the British Isles on a solo Turner lives with Ehlers Danlos Syndrome, a debilitating genetic condition that affects connective tissue, meaning she is a full-time wheelchair engineer from Seaford said the 2,070 mile (3,331km) trip was "about showing anything is possible. With a bit of imagination and a lot of hard work, there's no limit to what we are capable of".Ms Turner will set off from Brighton in her boat – named Fear! - on 2 June. Ms Turner was diagnosed with the illness when she was 18, which causes fainting and seizures. Due to complications, doctors have told her that her condition is now terminal. She is hoping to complete the sailing challenge within four to eight weeks. "If I'm not [done] by the end of eight weeks, I'm going to really need a proper shower, and I will run out of food and water," she added."I obviously don't want to die and I want plenty more time to chase my adventures."Ms Turner will be completing the non-stop and unassisted circumnavigation of the UK in a sailing challenge was "about living life and doing crazy stupid ideas you would normally put off," she added. Despite not being able to swim and being prone to seasickness, she has previously represented Great Britain in para-inclusive sailing of her family are sailors and she said she discovered the sport "by accident" on father, Chris Turner, has upgraded her boat to include a wind-powered generator that will help keep the modern satellite technology going during the said the family were once told there was only a 50/50 chance of his daughter making it through the night until morning."Once you've been through a few of these events, you start to realise actually she hasn't got much time left - just let her enjoy what time she has," he said."Although this is a bit of a stretch, I must admit."Ms Turner is raising money for Sailability, a charity that enables people with disabilities or who come from a difficult background to get into sailing.
Glasgow Times
17-05-2025
- Sport
- Glasgow Times
Stoke City fan's 300-mile charity walk from Celtic Park
Paul Venables, a Stoke City fan, will be taking in landmarks that were key to his footballing idol Lou Macari during his journey. The 50-year-old, who goes by the name The Bearded Wanderer, has already completed various fundraising treks, including walking 258 miles from Kidsgrove to Looe and 150 miles from Stoke to Watford. Paul will walk 300-miles starting from Glasgow (Image: Supplied) Read more: Celtic legend gives glowing endorsement of Hoops transfer target His latest challenge will be the furthest yet, walking 300 miles from Glasgow's Celtic Park all the way to Stoke to raise money for two different charities. Paul said: "I plan to start off on June 29 in Glasgow at Celtic where Lou started his playing career, then head south to Manchester and Old Trafford for July 11 where Lou played for Manchester United and also has his famous chippy, ending the stomp at Macari Centre on July 13, just a stone's throw away from where the Victoria Ground was, where Lou managed Stoke City. "I'm raising money for The Macari Foundation; a homeless charity whose patron is Lou Macari, who has strong ties to all three clubs. "All three walks also see me raise money for The Davies Foundation." Paul at Watford's Vicarage Road (Image: Supplied) Though the treks in themselves are a test of endurance, they are even more difficult for Paul, who suffers from Ehlers Danlos Syndrome, a condition which makes walking painful. He said: "Just to complicate matters, I'm a zebra, in that I suffer from Ehlers Danlos Syndrome. "As my variant isn't too bad (Classical Ehlers Danlos), it's mainly unsightly lumps on my elbows and knees, stretchy skin, and quite relaxed joints. "From a walking perspective, this can give me stiffness and inflammation in my ankles and Achilles so even without these stomps, some days walking full stop can be painful." As well as donating to the charities using his online Just Giving page, Paul is also asking for support throughout his latest stomp. Read more: Celtic to 'spend big' on striker as star's chances to be limited further Paul taking a break during one of his charity walks (Image: Supplied) He said: "Please help me raise much-needed funds for these community-based charities, or could you help me along the way, somewhere between Glasgow and Stoke. "I'm still looking to have one of my stopovers paid for and money for a kitty alongside the Just Giving page. "Or perhaps, if you're feeling up for it, then feel free to join me for a little while – it's only around 300 miles in a couple of weeks."
