Terminally ill sailor from Sussex completes inspiring solo voyage around the British Isles

Jazz Turner, who has Ehlers Danlos Syndrome (EDS), returned to Brighton Marina on Monday afternoon, June 30, after 28 days on the waves.

Jazz, 26, set sail from Brighton on Monday, June 2, aiming to become the first disabled person to make the journey around British Isles non-stop and unassisted.

Her ‘Project Fear’ challenge smashed the fundrasiing target of £30,000 early on and has raised more than £51,000 for Newhaven and Seaford Sailability so far. People can still donate at www.gofundme.com/f/project-fear.

EDS is not usually terminal but Jazz explained at www.projectfear.uk that her condition has progressed to the point where she has received a terminal diagnosis.

After returning she told the Sussex Express: “It definitely doesn’t feel real yet. It hasn’t sunk in. I spent most of last night expecting to wake up and have to do a sail change or do something with the boat. But I’m starting to realise not only that I’ve done the record, but also starting to grasp the impact that it’s had that’s a lot further beyond just the challenge.”

Jazz wanted her mission to inspire those who face challenges, while educating people about having a life-limiting disability, raising awareness about EDS and showing that disabilities can be a ‘driving force’ instead of a limitation. Jazz’s boat is an Albin Vega 27ft offshore racer-cruiser named ‘Fear’.

Jazz explained that she was met by a flotilla of supporters on Monday as she neared Seaford with more boats joining as she got closer to Brighton.

She said: “Coming into Sussex shores was a bit of a relief. It felt like home waters. It was like ‘I know where I’m going from here – been here, done that before many times’. But getting back into the Marina all the way from Seaford was just incredible. Having boats come out and greet me on the water and then the amazing reception I received within the Marina... I wasn’t expecting so many people to turn up so it was definitely overwhelming.”

Jazz reckons there were about 25 to 30 boats that greeted her. She said this was a combination of boats from Newhaven & Seaford Sailing Club, locals from Seaford and many people from Brighton Marina Yacht Club, as well as businesses like Brighton Boating (Lagoon watersports) and Maverick Boat Adventures.

She said it was wonderful to see her parents, boyfriend and best friend again, adding: “The biggest reuinion was with my golden retriever Phoebe, my assistant dog. That was the person I said hello to first.”

Jazz said it was ‘incredible’ to not have to use her wheelchair for four weeks while covering a ‘massive’ distance. She said: “I enjoyed most the freedom, especially when being offshore when it’s just you, the sea, the sky and the boat, just the simplicity of life. You eat when you’re hungry and sleep when you’re tired and sail the rest of the time.”

But the challenge was far from easy. Jazz encountered terrible weather conditions on the weekend of June 21 and 22, which brought her to tears for hours. She posted to Facebook on Sunday, June 22, to say she was ‘tired, wet, cold, hungry and in pain’. On Monday, June 23, she described her ‘sheer frustration’ at the exhausting circumstances but accepted her temporary loss of confidence as ‘just a part of life’ and expressed her desire to push forward.

Jazz described the voyage after the bad weather as ‘a rollercoaster’, saying that her boat ran aground off Folkestone Harbour at about 4am on Sunday, June 29. She said: “We had an unfortunate 24 hours prior to finishing where the boat got run aground and then I had to end up trying to attempt to re-float it, which was successful but it was definitely a bit more of an intense finish than I expected.”

Once she was safely on dry land again, Jazz celebrated with a pizza and by having an evening in the garden with her family.

She said: “For now, it’s mainly rest and then it will be getting back to it, sorting all the things out for Fear and starting to use the money we’ve raised and then go on to the next challenge.”

EDS is a group of rare inherited conditions that affect connective tissues. Jazz explained in her life story at www.projectfear.uk that she fell in love with sailing as a child but did not know she had been born with EDS. When she was 19 she snapped the tendons in her ankles by getting off a trampoline and MRI scans showed she had unhealed fractures in both ankles from years before. Jazz became a full-time wheelchair user after surgeries did not improve her movement. Her condition progressed to the point where she has lung and heart problems, as well as a paralysed digestive and bladder system. But Jazz kept sailing in adapted dinghies and boats, and competed for GBR. In December 2024, with her quality of life being ‘severely affected’ by hospital stays, Jazz decided to move onto palliative care while withdrawing invasive, life-prolonging treatments. She was given about six months to live and became determined to make the most of her time left.

“Ehlers Danlos Syndromes are complex but not terminal generally” – SEDSConnective has written a statement in response to our news article

It reads: “As the UK’s leading charity for symptomatic hypermobility and neurodivergence, SEDSConnective would like to clarify that EDS is not generally terminal or degenerative. EDS refers to a group of 13 heritable connective tissue disorders, 12 of which are rare. The most common subtype, hypermobile EDS (hEDS), and Hypermobility Spectrum Disorder (HSD) which together affect approximately 90 per cent of our members.

“Vascular EDS (vEDS) is a very rare form (approximately one in 50,000 people) and can be life-limiting, but it is typically diagnosed in childhood through genetic testing. Even in vEDS, with appropriate care pathways and management, many individuals live into adulthood.

“These conditions can come with significant co-occurring issues such as chronic pain, chronic fatigue, joint injury, POTS, MCAS, and neurodivergence, but they do not mean a terminal prognosis. Many people with EDS and HSD go on to lead fulfilling lives as athletes, artists, scientists and professionals.

“We welcome efforts to raise awareness of these conditions as advocates and always encourage our members to be advocates and raise funds for our voluntary userled charity, which is why SEDSConnective now transforming health and education equity, but urge all media outlets to ensure medical accuracy or more clarification to avoid unnecessary fear and misinformation.”

People can find out more at www.sedsconnective.org or the NHS website www.nhs.uk/conditions/ehlers-danlos-syndromes.