Wherever life takes her, Kylee Black greets everyone with the same warm grin and friendly attitude. “I’m back!” she beams as she wheels into a hotel to meet Woman’s Day, addressing our crew like old friends. “Great to see you guys.”
For the past decade, a cruel disorder has slowly eroded 30-year-old Kylee’s body, but she refuses to let it destroy her spirit.
“I’ve always loved to talk,” she smiles. “But when I went into the wheelchair, I began talking to everyone so people would look at me, not down at the chair.”
Kylee has Ehlers-Danlos syndrome, an incurable genetic defect in her collagen and connective tissue structure.
“It’s like playdough,” she says, pinching the skin on her arms into impossibly high peaks. The disorder also affects Kylee’s bones, joints, ligaments and blood vessels. “That’s about 90% of me!”
Stretchy skin and flexible joints are the most visible symptoms of Ehlers-Danlos syndrome.
It’s not unusual for Kylee to dislocate her joints up to 20 times a day. While she can stand for short periods, Kylee has relied on a wheelchair for almost a decade. She also has an irregular heartbeat, suffers chronic migraines and faints on a regular basis. “My flatmates have got really good at playing catch,” she quips.
More ominously, the disorder is slowly corroding her internal organs, and she faces more surgery this year to stabilise her bowel and bladder.
She’s also recently started wearing a neck brace as there’s an increased risk her neck will spontaneously dislocate.
“One doctor said, ‘Don’t worry – if it happens, you’ll go so quick, you won’t know anything about it.’”
As a child, Kylee’s frequent broken bones, dislocated joints and bruises were put down to clumsiness and bad luck, but the injuries and ailments continued into her teens.
Between the ages of 13 and 18, Kylee had her appendix out, was diagnosed with a rare blood disorder, started wearing glasses and hearing aids, was diagnosed with scoliosis and developed an eating disorder.
“I had eight diagnoses by the age of 19 but often felt my problems weren’t believed or taken seriously,” she explains.
The eating disorder was a way to take back some control of her body, she says, but 13 months in a residential treatment facility in Australia was a turning point for Kylee’s physical and mental health.
While she still struggled with fatigue and joint troubles, at 20, Kylee was an avid gym-goer who enjoyed running and kickboxing. “I was fit, the best I’d ever been,” she recalls.
At that stage, she still hadn’t been diagnosed with Ehlers-Danlos and always wondered why her body was so flexible.
“I’ve always had a big heart and I know what it’s like to struggle,” says the driven disability advocate.
But in 2008, she fell on a waxed floor, tearing a groin muscle. Within two days, she was showing signs of complex regional pain syndrome (CRPS), a malfunction
in the central nervous system that means pain can feel as intense as childbirth.
“It’s like pouring gasoline in your blood vessels, then setting your limbs alight,” she tells.
Doctors now think Ehlers-Danlos contributed to Kylee’s accident, but the injury then kicked off the CRPS. For the next three years, she could barely leave the house.
After a series of high-dose Ketamine treatments, Kylee improved and decided to direct her energy into helping others.
She set up Spirit Sparkplugs, an organisation that collects gifts for ill children. In 2012, she moved to Hamilton and connected with Enabling Good Lives, a programme run by both the disability sector and government, which helps people with disabilities take control back by choosing what sort of care they need.
It’s made such a difference to Kylee, she is no longer on a benefit and acts as an advocate for Enabling Good Lives and Mycare, a platform for people to choose their own support workers.
The future is about making the most of every moment. “I don’t know how long I’ve got in life, but I’ve got a good voice and I want to use it to bring about change for others.”
