Chloe Lawrence was a ‘normal, active kid’ who had never broken a bone in her body – but at the age of 11, her joints started making a loud cracking sound.
This cracking could be set off by something as simple as laughter, and the pre-teen would experience a sharp, shooting pain that eventually turned into a dull and persistent ache.
The condition meant she spent many days bed-bound and even missed two years of secondary school.
Doctors put the pain down to a growth spurt – despite her remaining the same height – as well as anxiety, and told Chloe and the family to wait it out.
However, Chloe continued to experience this pain and the cracking – which sounded like a ‘bowling ball being dropped’ – even moved to her kneecaps and saw them sometimes pop out of place.
It wasn’t until she reached the age of 22 that Chloe finally got a diagnosis of hypermobile Ehlers-Danlos syndrome.
The condition affects connective tissues that support skin, tendons, blood vessels, organs and bones, resulting in increased range of joint movement, stretchy skin, and fragile skin that breaks or bruises easily.
There is no cure for Ehlers-Danlos syndromes, but physiotherapy can help to strengthen joints and avoid injury.
Chloe said: ‘I was so happy, because all these years I’d said to my mum, “If I can finally get diagnosed with anything, it means I can get treated and there’ll be a solution” and then we were told there’s no treatment, just pain management.’
Ehlers-Danlos syndromes is thought to affect one in 5,000 people, but this late diagnosis appears to be quite common – particularly in women.
One study published in the British Medical Journal says it takes, on average, eight years longer for women to be diagnosed with Ehlers-Danlos syndrome.
An earlier diagnosis could have helped Chloe treat the pain and avoid things that make her condition worse.
For example, when it was unclear what she was experiencing, she was told to try yoga – which is not good for Ehlers-Danlos syndrome.
Chloe, now a photographer, says: ‘The problem is my body stretches too much. My joints are too stretchy. They’re able to just dislocate. Seeing as yoga is all about stretching, I would simply over-stretch my body.’
While Chloe is glad she now has a diagnosis, she wishes it hadn’t taken so long – so is encouraging others to persist if they feel something isn’t right.
She adds: ‘Please trust your gut when something is wrong. Get your kid to the doctors, get yourself to the doctors.
‘It took over a decade for me to be believed and diagnosed, and even though they didn’t believe me, they still gave me painkillers. They tried in their own way to help.’
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