All the updated news related to ehlers danlos syndrome

All the news related to ehlers danlos syndrome updated in real time

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Mother of girl with connective tissue disorder to don cape for 10k to find cure

The mother of a girl with a connective tissue disorder is to don a cape for a 10k which ends at Downing Street in a bid to find a cure within her daughter’s lifetime. Bonnie Jackson lives in Chislehurst, south-east London, with her nine-year-old ...

07 Jul 2023 at 07:00

Health

‘Degraded’ wheelchair user, 15, forced to shuffle up plane stairs after British Airways lost specialist chair

A 15-year-old wheelchair user forced to shuffle up a flight of aeroplane stairs after a jet bridge broke and British Airways lost his specialist chair and spare has described the experience on the £1,500 flight as “frustrating” and “degrading”. ...

01 May 2024 at 06:30

Health

Student on track to be UK’s first deafblind doctor blazes a trail for disabled medics following fears she would quit after pandemic hospital stay

A medical student who is training to become the UK’s first deafblind doctor feared she would have to quit when she was hospitalised for 17 months in the pandemic but is back on track and vows to blaze a trail for disabled medics. Alexandra ...

17 May 2022 at 08:25

Health

Disabled traveller left ‘housebound’ for months after £2,700 wheelchair damaged beyond repair on Aer Lingus flight

A disabled traveller whose £2,700 wheelchair was broken on an Aer Lingus flight has said they were left “housebound” for months squandering their life savings on taxis and food deliveries after the airline refused repayment. Winter Mraz, ...

29 Aug 2024 at 06:30

Health

English scholar “one trip-up from being internally decapitated” says post Covid she needs “imminent” stem cell therapy or may die or give up

An English scholar who is “one trip-up from being internally decapitated” says catching Covid has exacerbated the agony caused by her ultra-rare conditions to the extent that if she fails to get life saving stem cell treatment ...

12 Apr 2022 at 08:25

Health

Swimming in freezing water saves adrenaline junkie from constant pain and inspires her to write a novel

An adrenaline junkie who hails swimming in freezing cold water as her salvation from constant pain after 20 operations because of hypermobile joints that dislocate in her sleep, has written a novel inspired by her experience. ...

15 Feb 2022 at 08:25

Health

Movement therapist with agonising connective tissue disorder undiagnosed for nearly 40 years coincidentally helped thousands of sufferers

A movement therapist whose excruciating connective tissue disorder went undiagnosed for nearly 40 years and took her on a fascinating exploration of the human body which saw her studying cadavers has coincidentally helped ...

01 Apr 2022 at 08:25

Health

Mum with rare condition causing long limbs and hollow face has filler to ‘look normal’ after being called a ‘freak’

A young mum with a rare condition which causes long limbs, “deformed hands” and a hollow face has had filler injections to “look normal” after being called a “freak” in school. Zoe Ridgway, a 32-year-old mum to Sofia, 12,...

19 Nov 2024 at 06:51

Quirky

Apprentice solicitor whose joints dislocate putting on a jumper says dreams are ‘real again’ thanks to assistance dog

An apprentice solicitor with a rare hereditary condition which means she risks dislocating her joints when opening a door or putting on a jumper has said her dreams of a legal career are “real again” thanks to her ...

05 Oct 2022 at 08:00

Health

Disabled woman rekindles passion with wheelchair dance group: ‘Like stick of rock, I’ve got ‘dancer’ through the middle’

A Leicestershire woman who has danced since she was a child has rekindled her love for the art form despite being a wheelchair user for almost a decade, saying “like a stick of rock, I’ve got ‘dancer’ through the ...

15 Sept 2025 at 00:01

Health

Woman in ‘living hell’ whose brain is slipping down her spine needs £200k for lifesaving treatment to stabilise skeleton

A 25-year-old who has been mostly bed bound by a painful condition that is causing her brain to slip down her spine is pleading for help to raise funds for lifesaving treatment in the US to stabilise her ...

09 May 2023 at 07:00

Health

Three-time wheelchair motocross champion, 17, says sport has given him his ‘life back’ and now hopes to inspire others

A 17-year-old who first tried wheelchair motocross in 2020 has since become a three-time world champion, saying the sport has given him his “life back” after a childhood spent unable to walk without ...

16 Oct 2025 at 06:55

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