logo
Seaford woman on solo British Isles sail feels 'unstoppable'

Seaford woman on solo British Isles sail feels 'unstoppable'

BBC News05-06-2025
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 user.She 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 boat.She's also had leaking windows, water tanks breaking free and soaking everything inside the cabin, and a broken magnetic compass which communicates with the chart plotter.Nevertheless, 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 18.Due to complications, doctors have told her that her condition is now terminal.The 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.
Orange background

Try Our AI Features

Explore what Daily8 AI can do for you:

Comments

No comments yet...

Related Articles

Lyon ‘forced to sign player they don't even want from Nottingham Forest' – before shipping Arsenal flop straight to MLS
Lyon ‘forced to sign player they don't even want from Nottingham Forest' – before shipping Arsenal flop straight to MLS

Scottish Sun

time3 days ago

  • Scottish Sun

Lyon ‘forced to sign player they don't even want from Nottingham Forest' – before shipping Arsenal flop straight to MLS

Lyon owner John Textor is at the heart of Crystal Palace's legal battle to remain in the Europa League NO TURN-ING BACK Lyon 'forced to sign player they don't even want from Nottingham Forest' – before shipping Arsenal flop straight to MLS Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) LYON have been forced to complete the signing of Nottingham Forest keeper Matt Turner despite no longer wanting him. Turner's move from Forest had been approved months ago by Lyon owner and ex-Crystal Palace stakeholder John Textor. Sign up for Scottish Sun newsletter Sign up 4 Lyon have been left with no choice but to sign Matt Turner after they failed to cancel a transfer deal that was arranged months ago Credit: Getty 4 Turner has spent time with Arsenal, Crystal Palace and Nottingham Forest in the Premier League Credit: Getty 4 The deal was brokered by Lyon owner John Textor, who is central to Palace's Europa League relegation Credit: AFP Play Dream Team now! Play The Sun Dream Team ahead of the 2025/26 season Free to play Over £100,000 in total prize money Play in Mini Leagues against your mates Submit a team for Gameweek 1 to enter £5,000 prize draw Play via Dream Team's app or website today! But it was revealed last week that the French club had hired a lawyer to broker a cancellation of the deal with Forest, after Textor resigned from his leadership roles at the end of June. L'equipe reports that the American had agreed a deal with Forest owner Evangelos Marinakis for the keeper months ago, for around £7million. Efforts to cancel the switch were unsuccessful and the French giants are now being forced to hand the 31-year-old - who won the FA Cup on loan at Palace last season - a three-year contract. It has been a turbulent few months for Lyon, after their punitive relegation to Ligue 2 due to financial issues was overturned by the French Football Association. READ MORE ON FOOTBALL Wrex bomb ITV confirm first free-to-air matches of new season including Wrexham opener There has been small exodus of players from the club so far this summer, with Rayan Cherki making a big-money move to Man City, as well as Lucas Perri moving to Leeds and Said Benrahma's loan move to Neom being made permanent. Thiago Almada's loan from Textor-owned club Botafogo has ended - and he has since been sold to Atletico Madrid - while young winger Malick Fofana has been heavily linked with a move to Everton. In an effort to save precious funds for the rest of the transfer window, Lyon have reportedly arranged for Turner to be sent on loan for the upcoming season. he will return to his old club New England Revolution in the MLS, with the club taking on his full wages and holding the option to make the move permanent. CASINO SPECIAL - BEST CASINO BONUSES FROM £10 DEPOSITS Textor's holdings with Lyon were the cause of Palace's demotion from the Europa League earlier this year, with Uefa citing a breach of multi-club ownership 'integrity' rules. The Eagles are set to plead their case to the Court of Arbitration for Sport next week. Matt Turner shows off his goalkeeping skills at Nottingham Forest training Chairman Steve Parish branded the decision to relegate them to the Conference League as 'the biggest injustice in the history of sport'. Palace argue that Textor, who has now sold his Selhurst Park shares to New York Jets owner Woody Johnson, never had 'decisive influence' at the club. Now the Lausanne-based Court has confirmed Palace's case 'versus Uefa, Nottingham Forest and Lyon' will be heard in front of a three-person tribunal on Friday, August 8. Both Palace and Uefa will be allowed to choose one Judge from the CAS panel, with the chair appointed independently. CAS added: 'No decision will be issued on August 8. 4 Crystal Palace chairman Steve Parish will lead the club's appeal of the decision in an attempt to reinstate their Europa League status Credit: Getty 'It is expected that an operative decision (without grounds) will be rendered on August 11, 2025.' Turner's current club, Forest, are named in the action because they stand to benefit from the decision. The Reds, who qualified for the Conference League, will be promoted in place of Palace if the Uefa ruling is ratified. The Eagles are due to discover their opponents in the Conference League play-off round on Monday - although if they win at CAS, it will see them being replaced in the third-tier competition by Forest. Ironically, the two clubs are due to meet in the Premier League at Selhurst Park on August 24, a match sandwiched by the two legs of the play-off round.

I'm facing paralysis at 29 but the NHS won't operate
I'm facing paralysis at 29 but the NHS won't operate

Telegraph

time3 days ago

  • Telegraph

I'm facing paralysis at 29 but the NHS won't operate

My left side is numb and almost impossible to move and my hands feel so weak I can't even hold a phone. I have nerve pain all over my body that feels like it's being constantly rubbed with nettles or having acid thrown on me. I am 29 years old and have Ehlers-Danlos Syndrome, a rare but under-diagnosed condition that affects as many as 268,000 people in the UK – up to 90 per cent of them women. There is an operation that I could have to address my symptoms but it isn't available on the NHS or anywhere in the UK. I wouldn't wish this on anybody – the pain I feel is exhausting, constant and often terrifying. Most people have never heard of EDS but it's a genetic condition that affects the collagen in your body, making connective tissues like skin, ligaments and blood vessels very soft. The connective tissues are so weak that my neck is no longer able to support my head. My skull presses on the brainstem at the top of my spine causing severe neurological symptoms. Brainstem compression like mine can lead to paralysis because it disrupts vital signals between the brain and the body – which terrifies me. When the pain gets really bad, especially in my face and my head, my left eye hurts so much that I almost want to tear it out. It affects my vision too. Coping with the pain Despite my disability, I was working until a few months ago. I was an administrator at the Royal Hospital for Neuro-disability, close to where I live with my dad and his partner – who I call my stepmum – in her flat in Putney. I loved being with the patients, being creative, coming up with activities that paralysed people could do, like tie-dyeing and birdwatching. I put a lot of love into that job. But my condition deteriorated and in the end I had to stop working. Now I spend time alone listening to audiobooks – sitting up to read causes too much strain – occasionally seeing a friend and resting. What scares me most is the thought that my life will be just this pain and even paralysis. When it's excruciating, I have dark thoughts but wouldn't act on them because I have family and loved ones, and don't want to hurt them. The diagnosis I was diagnosed with EDS in my early 20s but looking back I've been unwell since my teens. At first my doctors put the pain down to anxiety, saying it was all in my head and that I was overemotional. It's true, I was very stressed as my parents were getting a divorce; I had an eating disorder and was unhappy at school. But if you're in excruciating pain, you're obviously going to be crying and asking for help. As a child my life was pretty normal but I was always hypermobile as a kid, which is common in people with EDS. My left leg would bend inwards but I wasn't in any pain. People with EDS often suffer from dislocated joints and though my joints would partially dislocate, it never really bothered me until I was 16, when I started getting pain in my spine. With EDS, you often become more symptomatic as a teenager and in your early 20s. When I was 20, they finally said, 'Oh, you've got fibromyalgia.' I began subscribing to the magazine of a charity, Fibromyalgia Action UK, which had an article about EDS and how some people with it were being misdiagnosed with fibromyalgia. There was a list of symptoms and an explanation of the Beighton score – an assessment tool used to measure joint hypermobility, or excessive flexibility – and I thought, 'Oh God, that's me!'. I contacted the doctor who wrote the piece, and he advised me to get a referral to an NHS rheumatologist, who confirmed that I did indeed have Ehlers-Danlos. I was then referred to University College London Hospital for pain management and physiotherapy splints, which I wore on my wrists and ankle. My neck pain wasn't so bad then, but I've had to use a neck brace to support my head since the nerve pain started increasing when I was 25. Living with the condition I studied international relations at the University of Sussex, but had to come back to London and study from home with the Open University. It took me six years to graduate. By then I had reconnected with a friend from school and we became a couple. We rented a flat and he looked after me full-time, getting a carer's allowance, because I had to use a wheelchair, and needed help to wash and get dressed. He was amazing and put up with a lot during our seven years together, but it just got to the point where I was too unwell to be in a relationship. Now I live with dad and my stepmum and they have been amazing. Hope for an operation The operation to address it isn't available on the NHS, or anywhere in the UK, for people with EDS because of debate about its effectiveness, even though specialists in Europe and the US are convinced it's very likely to help. My hope is to see one of these specialists in America. My Dad has sold his house at 75, raising £70,000, and my aunt has given me £10,000 of her savings. It's only with their help that I can even think about going to the States for the operation. The surgery will fuse the vertebrae in my neck so it supports my head better, which will ease the pressure on my brainstem, to relieve the nerve pain and stop my other symptoms, including seizures. The surgeon I'm hoping will operate has a 90 per cent success rate. We're still well short of the £150,000 I need for the surgery and travel but I refuse to let this condition ruin me and have set up a GoFundMe page so that I can pay for it. Why the NHS won't operate To be honest, I feel gaslit by the NHS. I was given an MRI lying down, which didn't measure the full stress on my neck. After I paid for a private upright MRI, specialists in the US and in Europe said its results confirm my condition. But the NHS disregards this, even though it did perform this operation on EDS sufferers until about 2017, and a study was being done into its benefits, but all that stopped before the pandemic. Now, no British doctor will give me a diagnosis, even though one referred me to the US surgeon who will now hopefully operate. I'm hoping I can eventually go back to my job, even if it's part-time, and be free of the terror of being paralysed. Despite all I've been through I haven't given up on life – or love. I recently met someone online, who seems to genuinely like me – being unwell filters out insincere people – and we've had a few picnic dates where I've been able to lie down and talk to him. I'll never be a mother because I don't want to pass on the EDS, which there's a 50 per cent chance of, but he has kids so, who knows, maybe one day I can be a stepmum to them? I won't have the life most women my age dream about, but I have hope that I can live a good and happy one if I get this surgery, avoid paralysis and am no longer in this horrendous pain.

Somerset woman's wait for transplant could take 'many more years,' amid record waiting lists
Somerset woman's wait for transplant could take 'many more years,' amid record waiting lists

ITV News

time4 days ago

  • ITV News

Somerset woman's wait for transplant could take 'many more years,' amid record waiting lists

ITV News' Louisa Britton has been speaking to Kerry Fear from Yeovil, who has been on the organ donation waiting list for more than a year. A woman from Somerset who has been living with a heart condition for decades has said she could have to wait "many more years" for a life-saving transplant. Kerry Fear, from Yeovil, has been on the organ donation waiting list for more than 12 months already, after doctors told her her heart was "failing." The 50-year-old, who was born with two holes in her heart, two of her arteries the wrong way round, and only three heart chambers, has had multiple heart surgeries and pacemakers fitted throughout her life to manage her complex heart condition. But she said the treatments are becoming less effective, and she was added to the waiting list for a heart transplant in May 2024. Ms Fear said: 'I've noticed that my heart rhythm isn't normal and has been slowly declining. I don't feel brilliant. I don't feel terrible. But you can deteriorate quickly. 'I knew being listed for a transplant was coming. At first, it was scary as you realise the magnitude of it. But as time goes on, you have to get on with life." The NHS has warned it's facing an "incredibly concerning situation" where more people than ever are waiting for transplants, but fewer donations are taking place. Figures from NHS Blood and Transplant show donor show 8,096 patients in the UK were on the active transplant waiting list as of 31 March 2025 – the highest number on record. In the South West, 596 people are currently on the waiting list for a transplant. Under the 'opt-out' system, donation can only go ahead with the family's support and consent rates for organ donation across the UK are at 59%. Director of Organ and Tissue Donation and Transplantation, Anthony Clarkson, has urged people to take action by registering their decision on the NHS Organ Donor Register. "Tragically, someone will die today waiting for a transplant, and we urgently need more people to register their decision to donate and to have these vital conversations with their families," he said. 'Last year, 60% of people who donated after death were on the NHS Organ Donor Register, which made those conversations with families so much easier. "People are far more likely to support donation when they know it's what their relative wanted.' Ms Fear said a transplant would give her "confidence and freedom," but she is determined to enjoy life as much as she can while she is on the waiting list. "I don't want to miss anything or waste any time when I can do what I can at the moment. 'Most days, I put waiting to the back of my mind. If I think about it, it's quite an odd thing – it could happen any time, and I am used to surgery, but this is very different.

DOWNLOAD THE APP

Get Started Now: Download the App

Ready to dive into a world of global content with local flavor? Download Daily8 app today from your preferred app store and start exploring.
app-storeplay-store