A former songwriter whose dreams of becoming a professional singer were shattered by a rare condition, which makes her skeletally thin despite being tube fed for 10 hours a day, is now desperate to start a drastic treatment to inject her daily nutrients straight into her heart.
After a persistent dislocated right hip baffled doctors, whose attempts to fix it kept being foiled, Chloe Evans-Lippett, 31, was diagnosed with Ehlers-Danlos Syndrome (EDS) in October 2012 – a group of rare conditions that affect connective tissue and, in her case, cause increased joint movement.
Refusing to give in, Chloe, who has a daughter, Amelia-Rose, 10, with her husband, Tony, 48, who is her full-time carer, was still determined to pursue her dream, despite her diagnosis, and in early 2015 launched an album of jazz songs which she had also co-written and sung.
Chloe, of Bridport, Dorset, England said:
“I never wanted to be X-Factor-style famous, but singing was something I really loved doing."
“Forming a band called Unexpected Songbird with my musician friend, Steve Jones, we recorded and launched our first album, with me singing and him on piano."
“We had a sold-out gig to launch it at Bridport Arts Centre, but not long after that my health problems started to snowball, meaning I had to stop singing."
Sadly, just a month after the album launch, Chloe – whose condition was already affecting her mobility – was dealt a devastating blow, when doctors told her she needed an ileostomy bag fitted, to collect her body waste, as her bowel had failed.
She said:
“Not long after the launch of my album, my bowel suddenly stopped working, I wasn't able to go the toilet for months."
“There was one doctor at our local hospital who had a proper understanding of EDS and he explained to me that the soft tissue in my bowel had stopped working and, as a result, it was sluggish and not working properly."
She continued:
“Now, I have no energy, I'm in pain all the time and I have no quality of life."
“When I was pregnant with my daughter I had a very specific idea of how my life would be and it could not have been further from how it's turned out."
“Me, my husband and daughter have all been hugely affected by this disease."
Incredibly shy growing up, Chloe had only properly found her voice when her health disasters began.
It was not until a fellow church goer noticed her incredible singing voice, as she belted out hymns when she was 22, that his compliments encouraged her to start pursuing singing as a career option.
Said Chloe:
“The thought of singing solo used to fill me with dread before this."
She continued:
“Then one day I met a man through church who was a saxophone player and he approached me after the service and said, 'Do you want to make some jazz?'"
“I was so nervous when I first took him up on his offer that, during rehearsals, I wouldn't even sing into the mic – I was too embarrassed in front of the builders renovating his house!"
But, after overcoming her fears, Chloe began singing regularly – performing up to four times a months at paid gigs in local theatres and bars.
Then, one afternoon in April 2012, she was lifting her daughter when she felt a “burning pins and needles" sensation in her right hip.
After days of using an ice pack to try and ease the uncomfortable feeling with no avail, Chloe visited her local GP where, by now hobbling, she was given crutches and told to come back in two weeks.
Unfortunately, her symptoms intensified, and she was referred to Dorset County Hospital to see an orthopedic specialist.
And, following an MRI scan, doctors discovered Chloe had torn ligaments in her hip, which were making it semi-dislocate every day, so, in September 2012 she was booked in for surgery to remove the loose tissue and correctly position her bones, to prevent any further dislocating.
But, a week after the operation, her physiotherapist made a startling discovery.
“I was working on getting movement back in my joints and I suddenly felt my hip pop again."
Chloe added:
“I didn't realize at the time, but it had fully dislocated and, thinking nothing of it, I just popped it back in."
She continued:
“It wasn't comfortable, but I soon realized I could pop the joint in and out by myself."
“As soon as the physio found out this was happening, he sent me right back to see my consultant."
Referred to a specialist at University of Central London Hospital (UCLH), while she waited for her appointment, Chloe's right hip joint was dislocating up to 20 times a day.
“I'd always had 'clicky hips' growing up, but I'd never thought anything of it."
“Now, suddenly they were dislocating every day, sometimes every hour, and it left me in absolute agony."
Desperate for answers as soon as possible, Chloe's parents, who she would rather not name, kindly paid for a private appointment at UCLH, in October 2012 where, after a thorough physical examination, she was diagnosed with EDS.
“The doctor ticked off each particular movement I could do, which I just thought of as being flexible, and told me they were all strong indicators."
“I can pull my thumbs down to my wrist, put my knee to the side and have one foot face forward and the other one back."
“But the worst thing about my EDS was hearing that in some cases it's genetic, which means Amelia could get it. That's what keeps me up at night. That's what makes me shout and scream."
Still, at first, Chloe kept going, despite needing crutches or a mobility scooter when she left the house.
“At first, I was still able to lead a good life and do what I wanted. If anything, the diagnosis spurred me on to do more while I could."
But all that changed once she needed an ileostomy bag and she was booked in for surgery in October 2015, at the The Winterbourne Hospital, in Dorchester, Dorset, which she paid for privately, so that she could have the operation “as quickly as possible."
Despite the seriousness of her condition, however, Chloe saw having the bag fitted as a positive move, saying:
“A lot of people struggle psychologically with whole ileostomy thing, but I felt completely blessed."
“The crippling stomach pain went and I was able to start eating again."
Sadly, the relief did not last for long and six months after her operation, she started being sick after every meal.
“It was quite infrequent at first, every now and then I would throw up after a meal here or there but it immediately raised red flags."
“As the weeks passed, I was being sick after every single meal. I couldn't keep anything down."
Referred back to UCLH by her GP, doctors confirmed that Chloe's EDS was now impacting on her stomach.
“They told me it wasn't working properly and that I couldn't digest the food I was eating, so instead it was being pushed up."
Kept in hospital on a feeding tube for seven weeks, the decision was made to fit Chloe with a permanent feeding tube in February 2017 that she can administer herself at home.
She explained:
“That's where I'm at now and that's where I've been at for the past few years."
She added:
“Each day I attach a tube directly to myself, feeding me 50ml of liquid food every hour, for 10 hours a day, providing me with a total of 1,000 calories – the amount people normally have on a strict weight loss regime."
Standing at 5ft 11in, Chloe, who used to weigh 165 lbs, has seen her weight plummet to just 112 lbs, giving her a body mass index (BMI) – used to gauge a healthy weight – of just 15.6, as opposed to the NHS recommended range of between 18.5 to 25.
Worried that losing more weight would impact further on her failing health, Chloe is now keen to start a treatment available at Hampshire's Southampton General Hospital.
Called total parenteral nutrition (TPN), it enables the body's daily requirement of nutrients to be fed through a catheter placed in a vein leading to the heart.
“I'm waiting for the referral from my consultant until I can start the treatment."
“In the meantime, I'm hoping to raise funds to see the private specialist at UCLH so we can look into alternatives and make sure I'm at the forefront of any research that might be possible."
She continued:
“I've been told I should be seeing an EDS specialist every six months but with costs adding up to £600 ($780) per appointment with trains and accommodation, having no income makes it next to impossible."
“I'm relying on the kindness of strangers to help me to raise £4,000 ($5,195) using GoFundMe at this point, in the hope it will give me some form of a life back."
“Amelia knows any day I could be rushed off to hospital for weeks or months if I get much weaker."
She added:
“Worst still, she knows this illness could kill me. She's asked me on more than one occasion, 'Mummy are you going to die?'"
“There's got to be more to life than this. I just hope sharing my story gets me one step closer to a better life and will help raise awareness of this awful disease."
To donate to Chloe's fundraiser, visit www.gofundme.com/f/ej5428-help-chloe-eat-again
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