Bodybuilding mom, 36, fears she won’t live to be 50 after diagnosis

A bodybuilding mum fears she won’t live to see her 50s – after being diagnosed with a rare joint condition. Tracy Kiss, 36, has always put her flexibility and high energy levels down to being fit and healthy.

When he took up bodybuilding at 29, he “didn’t think much” about spraining his joints – which happened at least once a month. But when a stranger noticed her double joints and told her to get checked, she went to the doctors to find out what was going on.

In May, she was diagnosed with Ehlers-Danlos Syndrome (EDS) – a rare group of conditions that affect the joints, skin and heart. Certain types of the condition have a life expectancy of 48 years, and Tracy fears she won’t live to see her children marry, have children or succeed in their careers.

Mum-of-two Tracy, a marketer from High Wycombe, Buckinghamshire, said: “I’m very fit – but I could have a ticking time bomb in my chest – as many EDS patients suffer from heart problems. I always put my poor joints to be really healthy – I exercise my muscles all the time.

“It’s worrying to know that I’ve gone my whole life without conclusive treatments or diagnoses – EDS became something I had to live with.”

Tracy had always been fit and healthy before becoming a bodybuilder – going for regular bike rides and runs. But after giving birth to her first son, aged 12, she began training and competing professionally.

She had had PIP breast implants for seven years – before they broke when her son was born, leaving her without any upper body strength. And he turned to weight training as a way to cope.

“I was physically weak,” she said. “I couldn’t even have a cup of tea. I decided to turn to fitness as a way to get stronger – and lose some weight.

“Movement became my practice for suffering and pain.”

She began training on American exercise videos led by Shaun T – a former Marine. Military-style workouts included lunges with weights and squats.

Tracy did this five days a week – alongside juggling childcare and her full-time job – until, in 2017, she got her ‘pro’ card and started competing. In April 2017, she placed second at the World Bodybuilding Federation (WBF) Bodybuilding Championships.

She said: “It all started to happen organically – I didn’t even think I was going to land. I couldn’t believe it when I came second – it was so exciting.”

But during her training years – she found that she injured her joints very easily and made frequent visits to the pharmacy to find out what was going on. “There was a month where my little finger just turned black,” she said.

“It was bent on the back, painful and I thought I could get some advice from a pharmacy. When I told them what was going on, they asked me how long it had been like this.

“I said a month – and they sent me straight to hospital.”

Doctors told Tracy that her finger was dislocated and that she should be very careful when lifting weights. She says she’s grown used to “excuses” from medical professionals – after years of being told her joint pain was due to a condition called delayed-onset muscle soreness (DOMS), which is common in people who exercise in regularly.

But two weeks ago (on 01/05), one of her TikTok followers noticed that her shoulder joints were pointing backwards – which Tracy always thought was double-jointed. She said: “I thought I had DOMS – which made me feel like daily pain was part of being active and healthy.

“It was a very emotional 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 behind my back and everyone thought it was a laugh.

“I’ve never met anyone else who can do that – but when that man saw my back shoulder joints, he said I might have EDS.”

Tracy made an appointment to have an EDS evaluation with her doctor—which involved asking her a series of questions about her hypermobile joints, her aches and pains. On May 7, she was diagnosed with EDS – and told she would need to be referred to hospital to be tested for vascular EDS, which would mean blood vessels and internal organs are at risk of bursting open.

If the test is positive, they are unlikely to live past 50. “My doctor said there was no doubt I had EDS,” she said. “It was such a shock. I haven’t booked in for the vascular test yet – but at 36 it would be good to know if I’ll only be around 12 years.”

She believes a large number of fitness fanatics go undiagnosed with the condition, labeling it the “silent killer”. She added: “A lot of people at the gym are very energetic people – even mums who go to the gym are full of energy. Not because they’re fit – but because they’re overstimulated.

“Many gym goers have it without realizing it – but it’s the silent killer. I am very fit, but it is very possible that I will die one day soon.

“I have a ticking time bomb in my chest – and very healthy people could have this disability without knowing it.”