It took a woman 22 years to be diagnosed with an incurable condition despite her hips making noises "like bowling balls being dropped."
Chloe Lawrence, a 24-year-old photographer from St Helens, began experiencing joint pain when she was 11, although she was a "normal, active kid." The pain would come as a sharp, shooting pain which could be caused even by laughing, and would then become a dull persistent ache.
Chloe was forced to miss two years of high school, bedbound with pain, and classmates even feared she had died. Despite the severity, doctors thought her symptoms were a growth spurt, or even anxiety, and told her to wait it out, the Liverpool Echo reports.
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Chloe's symptoms worsened, and she developed "flabby" skin around her ankles, which she thought was her gaining weight. But at 22, she was finally diagnosed with hypermobile Ehlers-Danlos Syndrome.
According to the NHS, it is one of a group of inherited conditions affecting 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.
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."
There is no cure or treatment, but sufferers can benefit from physiotherapy to strengthen joints, to help prevent injuries. Ehlers-Danlos Support UK said: "EDS cannot be 'cured' but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have."
The condition affects around one in 5,000 people, with a study published in the British Medical Journal in 2019 found it in one in 500 people, roughly 70% of whom were women. Despite this it usually takes women eight years longer to be diagnosed.
Earlier diagnosis could have helped Chloe as she would have avoided counterproductive suggestions, such as trying yoga, which is "one of the worst things" she could do.
Chloe said: "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."
Chloe would also have missed less school and comments from other classmates.
She said: "It was a bit hard to get out of the mindset all the pain had put me in, and to be cheerful and happy to be making friends. I really missed the friends I already had, and I was such a big lover of school before. I loved learning, I loved going to school. It was something I was really passionate about. I was in the highest sets, and then after this, I was dropped down a set or two."
Chloe found college more understanding, with tutors who nurtured her interest in photography. She does wish it hadn't taken so long to be diagnosed.
She said: "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."
