Latest news with #EhlersDanlosSyndrome
CTV News
5 days ago
- Health
- CTV News
Montreal-area nurse and mother of 3 says high cost of a service dog is holding her back
A Montreal-area nurse who has Ehlers–Danlos syndrome needs a service dog but has to pay $35,000 to get one. For Josee St-Onge, tasks as simple as preparing a meal can become a painful endeavour because she suffers from a disease called Ehlers–Danlos syndrome, a form of hypermobility disorder. 'Most people think of hypermobility as just a joint instability issue,' explained the mother of three. 'But in fact it encompasses so much more. So a lot of us are affected neurologically, with our digestion, skin issues, difficulty managing our blood pressure, our temperature. And of course, the biggest issue is damage from all the instability in the joints over time.' Something as simple as opening a door or bumping into someone can lead to joints dislocating. 'I don't have any ligaments supporting my wrist and most of my fingers are very, very mobile, so they tend to pop out very easily.' St-Onge, who is a registered nurse, works part-time from home, interacting with patients. But what she says she needs the most is a service dog that could help her with her mobility. 'The first thing is to really minimize the impact of my day-to-day on my hands and try to preserve as much mobility and strength as possible,' explains St-Onge. 'So she'll be helping me. You know, open doors, open my stove, my fridge. So she's trained to be able to go get my phone, go get me water, retrieve dropped items.' Quebec's two agencies that provide service dogs are overwhelmed with the demand from people with physical or mental conditions. The normal wait time would be at least two years. But right now, they're not even accepting new applications. 'You know, it breaks our heart to receive all these calls, to receive all these emails and that we just can't help. We feel helpless at times,' said John Agionicolaitis from the Asista foundation, which provides dogs for people suffering from PTSD, anxiety and other mental-health issues. The cost is also prohibitive without the backing of a charity. The MIRA Foundation tries to provide service dogs at no cost to those in need. But the financing isn't large enough to provide a dog to everyone who needs it. 'We calculate our dogs in the average of all of our programs. So we estimate it at, like, $35,000, but I think now we should say more. So it's really, really expensive,' explained Aurelie Tremblay from the MIRA Foundation. St-Onge did find help at the Summit Assistance Dogs Center in Medicine Hat, Alberta. But she can't afford the $35,000 investment. Despite having a job, she had to turn to the public for help. 'I'm very disappointed in the lack of access for me, especially for people with invisible disabilities. It's so hard to access any type of support or funding from the government. And the reality is our expenses are so much higher than the average person, you know, because each month we have specific medications or mobility aids or we have to take more time off work to go see a specialist.' With the help of the community in Ste-Anne-de-Bellevue, she has managed to raise half the amount needed, which includes the trip to Alberta's training centre. 'Over the past six months, we've held music events, we've held trivia nights online, raffles, we've had the GoFundMe link that's been live. We've been really working hard to try to get my story out there. And that's what's brought us almost $18,000 so far.' And if St-Onge can come up with the balance, she says she'll be able to once again have a resemblance to a normal life.
BBC News
30-06-2025
- BBC News
Terminally ill sailor from Sussex completes 2,000 mile voyage
A terminally ill sailor has completed her solo voyage around the British Isles, becoming the first disabled person ever to complete the feat without any Turner, an engineer from Seaford, East Sussex, arrived back at Brighton Marina this afternoon at 12.30 BST, exactly four weeks after setting off on 2 completing the course Ms Turner told BBC South East: "It's been a hell of a journey and I'm just so grateful for everyone because I couldn't have done it alone, it may have been a solo trip, but it's taken a small army."She battled through huge waves, heavy winds and even ran aground in Folkestone, Kent, days before completing her 2,070 mile (3,331km) trip this afternoon. The 26-year-old lives with Ehlers Danlos Syndrome, a debilitating genetic condition that affects connective tissue, but this did not stop her from raising £45,000 for charity."The best point was rounding the northern most part of Scotland and just screaming out because I didn't think I'd get that far, then it was a bit of a scramble to plot the second leg," She said. Her parents Chris and Carolyn Turner said they were "incredibly proud but very tired".Mr Turner said: "I think the worst part for her was the thunder and lightning, as well as going against the 35 knot (40mph) winds in Scotland and Falmouth."She's pretty much sailed non-stop for four weeks."Ms Turner, a full time wheelchair user, completed the voyage without any support, so had to use her anchors and the Spring tide to get off the rocks in Folkestone on Sunday has been using her 27ft (8m) boat named Fear for the solo, non-stop and unassisted navigation and said the journey was physically exhausting at times, but that it feels "unreal" to have done it. "With a lot of imagination and a rather large army to help and although you might have to do things differently, but if you can dream it, you really can do it," she said. Ms Turner was diagnosed with Ehlers Danlos Syndrome, which causes fainting and seizures, when she was to complications, doctors have told her that her condition is now originally hoped to complete the trip in four to eight weeks. Ms Turner has raised more than £45,000 for her charity Sailability, which helps people with disabilities access sailing.
BBC News
24-06-2025
- Climate
- BBC News
Terminally ill sailor in tears during storm winds on challenge
A terminally ill 26-year-old woman from East Sussex who is sailing solo around the British Isles has said a "horrific week of bad weather" left her "crying for hours". Jazz Turner, an engineer from Seaford, has Ehlers Danlos Syndrome, a debilitating genetic condition that affects connective tissue and means Ms Turner uses a left Brighton Marina on 2 June and hopes to complete the 2,070 mile (3,331km) trip within four to eight from Petershead on the east coast of Scotland she described the last 24 hours as being "battering" but also "rather thrilling". Ms Turner said the wind speed on day 24 of her challenge on Monday had reached gusts of over 34 on Instagram she said: "It made for some quite exciting but rather battering sailing."Secretly I was loving it."She added: "It's calmed down a little this morning, so today's focus is on resting my body."Everything is wet and damp and I am very fed up of it raining."Ms Turner has already sailed around Cornwall, Ireland and up to Shetland in northern Scotland. She was diagnosed with her illness, which causes fainting and seizures, when she was to complications, doctors have told her that her condition is now Turner is raising money for Sailability, a charity that enables people with disabilities or who come from a difficult background to get into surpassed her fundraising target of £30,000 within two weeks of the challenge and is now hoping to raise than £50,000.
BBC News
16-06-2025
- Entertainment
- BBC News
Terminally ill sailor Jazz Turner 'smashes' fundraising target
A woman with a terminal illness who is attempting to sail solo around the UK has already broken the fundraising target she set Turner, an engineer from Seaford, East Sussex, set off from Brighton on 2 June, hoping to raise £30,000 for Sailability, a charity which makes sailing possible for the Turner uses a wheelchair after being diagnosed with Ehlers-Danlos Syndrome, a debilitating genetic condition that affects connective has now raised her target to £50,000. Writing on Instagram, she said: "When I set my target it seemed impossible."We have not only achieved it, we have smashed it. There aren't enough words to say thank you. The impact this will have on others is incredible."The money will be used to buy two adapted boats for the charity.
BBC News
05-06-2025
- 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.
