A 31-year-old mother lost a third of her weight because of a rare tissue disorder that affects her joints and paralyzes her bowels.
Chloe Evans-Lippett thought she only had hypermobile joints and ‘clicky hips.’ However, her doctors became baffled when her hip would dislocate 20 times a day, causing agonizing pain she had to use crutches.
Mrs. Evans-Lippett was eventually diagnosed with Ehlers-Danlos Syndrome, a genetic condition that affects the joints, organs, and skin. Her condition got worse when her digestive system stopped working.
Because she couldn’t eat without vomiting, Mrs. Evans-Lippett has a feeding tube attached to her body that provides her with 1,000 calories a day. She also has a stoma bag to collect her waste.
But with her 10-year-old daughter, Amelia-Rose, and 48-year-old husband, Tony, the mother-of-one is determined to stay positive.
“Amelia knows any day I could be rushed off to hospital for weeks or months if I get much weaker,” Mrs. Evans-Lippett said.
“Worst still, she knows this illness could kill me. She’s asked me on more than one occasion, “Mummy are you going to die?”
“I have no energy, I’m in pain all the time and I have no quality of life. I’ve become so weak as the years have gone on, my body simply can’t hold my joints in place anymore.
“I was on crutches at first but I’ve been using a wheelchair full-time for the past three years now.”
The mother added: “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.”
Worried that losing more weight would have a negative effect on her deteriorating health, she is now keen to begin treatment at Hampshire’s Southampton General Hospital.
“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,” she said.
“But the worst thing about my EDS was hearing that in some cases it’s genetic, which means Amelia could get it,” she said. “That’s what keeps me up at night. That’s what makes me shout and scream.”
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