A young woman has shared details of the harrowing rare condition she suffers with which has left her in a wheelchair and unable to 'hug her mum'
As a teenager, Mercedes Valentine, 21, from Brighton, was so weak that she couldn't even be hugged by her own mum as it would risk dislocating her shoulder.
Despite her doctor parents both suspecting she suffered from Ehlers-Danlos Syndrome (EDS) – a condition that causes flexible joints and fragile skin – Mercedes was not diagnosed until she was 15.
During her last year of secondary school, she became bedridden from the illness, which left her exhausted and unable to walk or even muster the strength to make a cup of tea.
With her bones dislocating on a daily basis, Mercedes was constantly in and out of hospital, and was given a wheelchair as well as put on a two-year-course of physiotherapy to help manage her symptoms.
Mercedes, who has 132,000 followers on Instagram, said: "Being bed bound and just unable to do anything left me really depressed.
"I remember trying to sit up in bed and I just couldn't. I couldn't even do the most basic things, like hug my mum.
"Every time she did, it would dislocate my shoulder.
"I remember her crying about not being able to touch me. It was heartbreaking."
Despite the constant pain, Mercedes was determined to make the best of the situation.
Thanks to the twice-weekly physio sessions, she slowly regained her strength and in 2019, while at a sports fare at university, signed up for pole dancing lessons.
She said: "I was down in Brighton and I remember seeing this woman on the beach practising it.
"I just thought it was insane and I wanted to give it a go.
"I had finally got back my ability to walk and this was a complete world away from me being severely disabled just a few years before.
"I knew it took skill and you had to be physically fit so I signed up and I just really took to it.
"The thing is I was always sporty as a kid.
"I was one of those kids who couldn't sit still so I knew I had it in me."
With no medication available to numb the pain, Mercedes was forced to retrain and strengthen her muscles.
She began physio where she relearned how to sit up straight, rewalk through water training and stopped her fingers dislocating by continuously squeezing things.
"I was one of those kids who couldn't sit still so I knew I had it in me."
With no medication available to numb the pain, Mercedes was forced to retrain and strengthen her muscles.
She began physio where she relearned how to sit up straight, rewalk through water training and stopped her fingers dislocating by continuously squeezing things.
After daily routines, Mercedes was able to independently take herself to the gym before starting pole dancing.
Alongside her pole dancing training sessions, Mercedes also joined a gym to build muscle mass.
She said: "I loved doing upper body in the gym and found I progressed really quickly.
"I was honestly just enjoying the fact my body was starting to work like a normal human body and it made me really happy."
At the same time, Mercedes launched an Instagram page to show off her progress and within weeks, her posts began going viral.
She graduated from university last year with a degree in neuroscience and qualified as a personal trainer in December 2021.
The influencer is now using her fitness skills to help others but still worries about her own health and the future.
She added: "I want to be able to help others who are in situations like I was in.
"And I love sports, so I being a personal trainer is definitely the thing for me.
"It's pretty insane that I've managed to do it.
"I'm still scared about my condition. I could be in a wheelchair by the time I'm 30.
"It's always in the back of my mind that I have a time limit with it all but it's also what drives me.
"I could always revert back, so I've got to keep myself fit."
Her mum Julia, 58, said: "I am so happy that I can hug her again without her shoulders popping out.
"She's blossomed into a confident and fit young woman.
"I'm so proud seeing her succeed and how far she's come"
