WATCH: Kettering woman suffers rare condition which sees her joints dislocate 60 times a day
Danielle Shield suffers from Ehlers-Danlos Syndrome - an inherited condition which leaves her joints ‘loose’ and susceptible to ‘stick out at odd angles’.
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Hide AdShe has 60 breaks or dislocations a day and has given up sport, is often reliant on a wheelchair and has to avoid extreme temperatures.
Her hip dislocates when gets out of bed, her shoulder pops out as she brushes her hair and her jaw disconnects as she brushes her teeth.
Danielle regularly has to re-insert her joints back into place in public and has to endure the embarrassment of people staring at her.
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Hide AdSo she is releasing videos of her clicking her thumb, knee and shoulder into place to remove the stigma.
Danielle and her fiance Chris Harris, 22, are so accustomed to the condition that popping her joints back into place is ‘second nature’.
She said: “I’m sharing these videos to reveal the reality of living with a condition like mine.
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Hide Ad“My day is punctuated with dislocations, even playing on a games console or using cutlery can push my fingers out of joint.
“I’m used to seeing my body at strange angles and Chris has learned not to get freaked out when he sees it, now I just calmly push myself back together, as these videos show.”
Danielle says she was ‘always’ susceptible to breaks, bumps and bruises as a child, but believed this was because she played football every week.
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Hide AdAt 13 years old she started getting agonising stomach cramps called ‘abdominal migraines’ - and, unbeknown to her, the undiagnosed syndrome was causing this.
She started going for tests at 16 and, with her symptoms getting worse and causing more regular dislocations, breaks and pains, spent her school prom bare foot because high heels hurt her.
Three years later, at 19, she was diagnosed with Ehlers-Danlos Syndrome - a hereditary condition which meant her connective tissues, skin and joints are fragile - and told her body would dislocate numerous times a day.
Danielle, recalls: “It was heartbreaking.
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Hide Ad“I’d always been such a sporty, active person and now I was going to be told I’d be disabled, unable to move long distances and forced to live in pain, in constant fear of breaks and dislocations.
“I was told that the condition was likely to get worse and I’d spend the rest of my life on pain-management medication.”
She was also told that, if she had children in the future, she would need a C-section as giving birth naturally could shatter her pelvis.
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Hide Ad“That was the worst part of all,” she explained. “I had always seen myself carrying a pregnancy and giving birth one day, but to know that I had to rethink my whole future was really hard.”
Danielle underwent three operations over the next two years and regularly had her bones encased in splints and metal and fabric braces to strengthen them.
She gave up sport, which she loves, and joined a support group to cope with her life change.
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Hide AdDanielle said: “There was so much I had to adapt to make my life easier as the dislocations became more frequent, eventually totting up around 60 a day.
“On a standard day, my hip dislocates overnight while I’m asleep, then again when I roll out of bed.
“My arm and shoulder dislocate when I get dressed and brush my hair. Then my jaw dislocates when I brush my teeth.
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Hide Ad“On my way downstairs, a number of leg and hip dislocations can occur.”
Playing on a games console, using cutlery, bending over and walking down the street can cause dislocations, leaving Danielle reluctant to go out without a wheelchair.
She added: “Even when my bones don’t pop out I am constantly afraid they might as there are so many things that could trigger it.
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Hide Ad“I see potential hazards in things other people wouldn’t look twice at.”
Danielle tells how she is admitted to hospital if she has a particularly bad fall or break, but usually she massages her joints into submission herself.
“I spend my life clicking myself back in place,” she said.
Danielle worries her partner of seven years Chris, who works in an office, might be ‘put off’ by the ‘odd’ angles her limbs stick out at but says he is her ‘rock’.
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Hide Ad“We’ve been together since we were at school so he has seen me go from being active and outgoing to less mobile and cautious, with all the breaks in between,” she explained.
“Some people might be freaked out to see a person clicking their body into place but he takes it in his stride and never made me feel anything less than beautiful.”
She and Chris ‘choose their holidays carefully’ due to Danielle’s condition.
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Hide Ad“We usually stick to European countries and go when the weather is neutral.
“If the weather’s too hot my joints are looser and more susceptible to breaks and my bones become painful when it’s cold.”
Fed up with strangers staring when she is forced to click her joints back into place in public, brave Danielle had released videos of herself popping her thumb, shoulder, and knee cap into place.
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Hide Ad“These were just three of the dislocations I experienced in one afternoon,” she explained.
“They might make some people uncomfortable, but that discomfort is nowhere near what I go through on a daily basis.
“I want everyone to understand the reality of living with Ehlers-Danlos Syndrome.”
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Hide AdDanielle and Chris got engaged in September and she admits she could dislocate when walking down the aisle next year - but says with just her loved-ones there she won’t be embarrassed.
She adds: “Knowing my condition will get worse and thinking of the challenges ahead is scary but I just have to keep putting myself back together and getting on with it.
“This condition may weaken my body physically but inside I’m strong.”