A bodybuilder mum fears she won’t live to 50 after being diagnosed with a rare joint condition.
Tracy Kiss, 36, always put her flexibility and high energy levels down to being fit and healthy.
When she started bodybuilding at the age of 29, she “didn’t think much” of dislocating her joints — which would happen at least once a month.
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But when a stranger spotted her double joints and told her to get checked out, she went to the doctor.
In May, she was diagnosed with Ehlers-Danlos syndrome (EDS) — a rare group of conditions affecting the joints, skin and heart.
Certain types of the condition carry a life expectancy of just 48 years and Tracy now fears she will not live to see her children get married, have children or succeed in their careers.
The mother-of-two and marketer from High Wycombe, Buckinghamshire, UK, said: “I’m very fit but I could have a ticking time bomb in my chest as lots of EDS patients suffer heart problems.
“I always put my poor joints down to being really healthy — I work my muscles out all the time.
“It’s concerning knowing I went my entire life without any treatments or conclusive diagnoses. EDS became something I had to live with.”
Tracy had always been fit and healthy even before becoming a bodybuilder, going for regular bike rides and runs
But after giving birth to her first son, now 12, she started training and competing professionally.
Her breast implants, which she’d had for seven years, they ruptured when her son was born — leaving her without any upper body strength.
She turned to weight training as a way to cope.
“I was physically weak,” she said.
“I couldn’t even pick up a cup of tea.
“I decided to turn to fitness as a way to become stronger and to lose some baby weight.
“Exercise became my outlet for suffering and pain.”
She started off working out to exercise videos by former US Marine Shaun T. The military-style workouts included lunging with weights and squats.
Tracy would do these five days a week — alongside juggling childcare and her full-time job.
In 2017, she got her “pro” card and began entering competitions.
In April 2017, she placed second at the World Bodybuilding Federation (WBF) Bodybuilding Championship.
“It all started happening organically — I didn’t even think I’d place,” she said.
“I couldn’t believe it when I came second, It was so exciting.”
But during her years of training, she found she was injuring her joints really easily and frequently made trips to the pharmacy to find out what was going on.
“There was one month where my little finger just turned black,” she said.
“It was bent back, sore, and I thought I might be able to get some advice from a pharmacy.
“When I told them what was going on, they asked me how long it had been like that for.
“I said a month and they sent me straight to hospital.”
Doctors told Tracy her finger had been dislocated and she should take extra care when lifting weights.
She says she became used to “excuses” from medical professionals after being told for years her joint aches were due to a condition called delayed onset muscle soreness (DOMS), which is common in people who exercise regularly.
But on May 1, one of her TikTok followers noticed her shoulder joints were pointing backwards — which Tracy had always put down to being double-jointed.
“I thought I had DOMS which made me feel like daily pain was just part of being active and healthy,” she said.
“It was a very poignant thing for me — I’ve always been a fragile person, with a dairy intolerance and sensitive skin.
“Being double-jointed was my party trick. I could use my arms backwards and everyone just thought it was a laugh.
“I’d never met anyone else who could do that but when that man saw my backwards shoulder joints, he said I might have EDS.”
Tracy booked an EDS assessment with her GP and on May 7 she was diagnosed with the condition — and told she needed a hospital referral to test for vascular EDS, which would mean her blood vessels and internal organs are at risk of splitting open.
If she tests positive, she’ll be unlikely to live to 50.
“My doctor said there’s no question I have EDS,” she said.
“It was such a shock.
“I haven’t booked in for my vascular test yet but at 36 it would be good to know if I’m only going to be around another 12 years.”
She believes a huge number of fitness fanatics are going undiagnosed with the condition, labelling it the “silent killer”.
“A lot of people in the gym are very energetic people — even mums who go to the gym are bursting with energy,” she said.
“Not because they’re fit but because they’re overstimulated.
“A lot of gym-goers have it without realising … it’s the silent killer.
“I’m very fit but it’s very possible I could drop dead someday soon.
“I’ve got a ticking time bomb in my chest and very healthy people could have this disability without knowing.”
