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Photographer’s delight turns to heartbreak after long-awaited health diagnosis has no cure

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A photographer has shared how her joy at finally receiving a diagnosis after years of suffering turned to grief. Chloe Lawrence, 24, had hoped that finally finding out what led to her constant pain would solve the problem.

But she was devastated after doctors told her there was no cure. Now she is speaking out to urge others to “trust your instincts” if you feel something is wrong.

Chloe said she was a “normal, active kid” without any health issues until she was 11. Suddenly his joints started making crackles that could be triggered by something as simple as laughing.

But this led to a sharp, stabbing pain that eventually became a dull, lingering ache. She spent days bedridden, ravaged by pain, and missed two years of secondary school, which saw rumors of her death circulating among her classmates, reports the Liverpool Echo.

Believing it could be a growth spurt or anxiety, doctors suggested she wait. But the pain continued and despite years of searching for answers, none were found.

Chloe’s mother continued to search for answers as the crackle spread to her daughter’s kneecaps, knocking them out of place. Her symptoms continued to evolve, with “loose” skin developing around her ankles, which she thought was weight gain.

It was then at the age of 22 that the photographer, originally from St Helens, was diagnosed with hypermobile Ehlers-Danlos syndrome. According to the NHS, it is one of a group of inherited conditions affecting the connective tissues that support skin, tendons, blood vessels, organs and bones, resulting in greater range of motion in joints, stretched skin and fragile skin that breaks or bruises easily.

Chloe, who has been the same height since she was 11, said: “I was so happy, because all these years I said to my mum, ‘If I can finally get a diagnosis, it means I can get treatment and there will be a solution,’ and then we were told there was no treatment, just pain management.”

Although there is no specific treatment for Ehlers-Danlos syndromes, physical therapy can help strengthen joints and prevent injuries. Ehlers-Danlos Support UK said: “EDS cannot be ‘cured’, but many people learn over time to control it and lead full and active lives.

“Daily management of most types of EDS is based on the right kind of exercise, physical therapy, and stimulation. Additionally, you should seek referrals for any associated conditions you may have.”

Opinions vary on how common this ‘rare’ condition is, with some studies suggesting it affects one in 5,000 people. A study published in the British Medical Journal in 2019 found it in one in 500 people, around 70% of whom were women. According to the study, it takes an average of more than eight years longer for women to be diagnosed with Ehlers-Danlos syndrome.

An earlier diagnosis would have made a difference for Chloe, including avoiding counterproductive suggestions to treat her pain and joint issues. She has been told to try yoga, which is “one of the worst things” she can do.



Chloe’s skin is tight and fragile

Chloe said: “The problem is that my body stretches too much. My joints are stretched too much. They can just come apart. Since yoga is all about stretching, I would just stretch my body.”

Having answers as a teenager when symptoms first appeared would also have saved Chloe from setbacks caused by missed classes and negative feedback from other students. She said: “It was kind of hard to get out of the mindset that all the pain had put me in, and be joyful and happy to make 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 that I was really passionate about. I was in the higher sets, then after that I got dropped a set or two.”

Chloe fortunately had understanding and supportive tutors at university who nurtured her love of photography. But she wishes it hadn’t taken so long to get a formal diagnosis explaining the symptoms she’s been living with for so long.

he said: “Please trust your instincts when something is wrong. Take your child to the doctor, go to the doctor yourself.

“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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