Ehlers-Danlos syndrome: Sheffield woman who dislocates a joint nearly every day takes on running challenge

A Sheffield woman is running a 12-hour ‘runathon’ in the name of Ehlers-Danlos syndrome awareness month.
By Max Kilham
Published 30th Apr 2023, 10:27 BST
Updated 30th Apr 2023, 10:27 BST
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Jenny Anne Blackett, who manages the toils of EDS herself, will be running alongside the Sheffield Korfball club on May 28 around Endcliffe Park from 8am to 8pm.

EDS is a rare inherited condition that causes issues with connective tissue in the body. There are 13 types, with joint hypermobility among the more common symptoms. A 2019 report from BMJ Open found that approximately 1 in 500 British residents suffer with the condition.

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Jenny manages type 3, hypermobile EDS and with the month of May being Ehlers-Danlos awareness month, Ms Blackett has raised £378 so far on her GoFundMe page. Jenny discussed the difficulties managing the syndrome in everyday life.

Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.
Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.

She said: “How tired you feel when you've had a heavy day on your body with EDS is like trying to walk through water, but you're in a wetsuit that's full of sand. The most prevalent thing is joint dislocations. I dislocate a joint nearly every day.

“I have dislocated everything. All my toes, both ankles, both hips, both knees, both shoulders, both wrists, both elbows, all my fingers, some of the vertebrae in my spine and my jaw.”

For 12 hours straight, at least one of the club’s members will be circuiting the park in a continuous relay. Many of the runners will be dressing up for the occasion, moving swiftly around the park in fancy dress. Also, there will be a Korfball post in the middle of the park. The group are aiming to score 1000 goals by the end of the run.

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Ehlers-Danlos Support UK is the leading charity supporting those suffering with the condition.

Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.
Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.

Catherine Thurston is the fundraising officer at the charity. She offered her wholehearted support to Ms Blackett and the rest of the Sheffield Korfball Club in pursuing the lengthy feat.

She said: “We're really grateful to Jenny and Sheffield Korfball Club for their fantastic support of The Ehlers-Danlos Support UK during May Awareness month. The charity couldn't continue it's work without people like Jenny raising vital funds and awareness.

“Being diagnosed or suspected of having a chronic condition can be difficult, challenging and bewildering and many people don’t know where to turn and struggle to cope.

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“Jenny's support means that when someone with Ehlers-Danlos syndrome (EDS) needs information, advice or simply someone to listen, we can be there. We wish Jenny and Sheffield Korfball Club the very best of luck for this amazing 12 hour runathon challenge!”

Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.
Jenny Anne Blackett, from Sheffield, has Ehlers-Danlos syndrome, a rare inherited condition which means she dislocates a joint 'nearly every day'. She is taking on a 12-hour runathon with other members of Sheffield Korfball club to raise money for the charity Ehlers-Danlos Support UK.

Ms Blackett, who is a special needs teacher, acknowledged that her support base makes her one of the more fortunate individuals managing the syndrome.

She said: “I've had people pick up my prescriptions when I can't. Drive me to appointments and to A&E and just generally cope with all the scary times I've had terrible injuries. They genuinely make playing so much easier because there's no panic or fuss anymore… I feel super lucky.”

Jenny is aiming to raise £750 for the cause. You can donate to her GoFundMe appeal here.

Related topics:SheffieldEndcliffe Park