Three Kiwi women diagnosed with Ehlers-Danlos Syndrome (EDS) who struggled to have their illness recognised have died in the last three months.
Now an advocate says change is urgently needed to help those with EDS “lead the lives that they deserve to have”.
EDS is a genetic connective tissue disorder that can lead to gastrointestinal problems.
But even after being diagnosed with EDS by specialists, several New Zealand women have been labelled with “suspected factitious disorder” and other psychological issues when trying to get treatment through the health system.
Factitious disorder is a mental illness where a person creates symptoms and is willing to undergo painful or risky tests to get sympathy and special attention.
A Herald investigation in 2018 revealed the struggles four women faced to have their illnesses diagnosed. Three of those women have now died in as many months.
Georgie Ferris died on November 27, in her mid-20s. Ferris was unable to consume solid nutrition and lost 33kg as a result.
Dr Rachel Palmer passed away on November 4, aged 52. Despite 29 diagnosed medical conditions, she was told she had a borderline personality disorder and anorexia and there wasn’t specialist care for her.
Stephanie Aston died on September 1. Aston was accused of intentionally draining her blood to alter her blood counts, eating disorders and self-harm, that her mother was harming her and that she was faking fainting spells, coughing fits and fevers.
Ehlers-Danlos Syndrome’s New Zealand CEO Kelly McQuinlan said things needed to change before more lives were lost.
“EDS has clear clinical diagnostic pathways for diagnosis and in New Zealand we are slowly building our expert base but we continue to be met with medical professionals who don’t believe these disorders.
“In the last 12 months, we have had multiple untimely deaths in our Ehlers-Danlos Community in New Zealand.”
The lack of awareness and education in the medical population prevented those with EDS from getting treatment, McQuinlan said.
“These deaths, and many more in many other communities alike, could have either been prevented with appropriate and timely medical care with supportive management and ultimately allowed [people] to have better lives and the lives that they deserve to have.”
In a public statement, McQuinlan claimed there were some medical professionals unwilling to learn and research, and there was a lack of awareness and education for medical disorders, leading medical professionals to label patients with mental disorders.
“This leads to multiple issues for a consumer, and their human, disabled, and consumer rights are breached, when they do not receive adequate care and management, inevitably ending with poorer health outcomes and death.
“These deaths ultimately lie at the hands of those who denied them recognition, timely care and management.”
One of those women was a much-loved Christchurch mother of two and accomplished academic, Dr Palmer.
Palmer’s obituary noted she passed away at 10:30am on November 4, aged 52 years.
The Herald wrote about Palmer in 2018 after she spoke out when health professionals downplayed the debilitating illness that turned her life upside down.
Palmer struggled to receive treatment for her serious gastrointestinal problems and was instead treated as if a mental illness was causing her issues.
Palmer was a criminologist turned style consultant and had a PhD in criminology, a master’s degree in applied criminal justice and a double degree in psychology and education.
“Rachel was a much-loved wife and soulmate of Brent, a cherished mother of Cameron and Lauren, loved daughter of Julia and John, and a cherished sister of Sharon and David.
“Thanks to everyone who touched Rachel’s life over the years, and especially to the team at Riding for the Disabled, her very special friends Selena, Chris and Tracey, and to Dr Fraser Burling for his steadfast time and support of Rachel over the last decade,” her obituary said.
A service to celebrate Palmer’s life was held in Oaklands Chapel on November 13, at 2.30pm. Palmer wished attendees would dress in style, incorporating lots of colour.
Palmer was diagnosed with hypermobility and then classical Ehlers-Danlos Syndrome (EDS) at 38, after years of stress fractures, spinal problems, partial and full dislocations, and stomach problems.
“I was going to the gym, I was working different jobs, I had a business. I was really out there participating in society and then when I hit 40, things went severely downhill from there.”
She was largely bedridden with a permanent catheter, was incontinent and suffered excruciating pain.
Tributes poured in for Palmer, who was described as a beautiful, kind and strong woman.
“Rachel, I will forever remember your strength, tenacity, your kindness and you just being gorgeous fabulous you.
“Thank you for coming into my life, I’m so very sorry I didn’t get to say goodbye.
“All my love to you flying high and sprinkling your beauty everywhere,” one school friend wrote in a tribute.
“Our beautiful niece, cousin, it is with a heavy heart we say goodbye. In all our lives we must walk this lonesome road one day,” a family member said.
Following the death of Aston in September, New Zealanders suffering from the “invisible” illness called out for change.
Auckland woman Norma Hockenhull said women with EDS want to live normal lives and seek help, only for some to be labelled as having mental health disorders.
“I want doctors and other medical professionals to understand what Ehlers-Danlos is. There are multiple types, it affects everyone differently.
“Just because we are young women does not mean we are looking for attention or that we are histrionic, many of us have grown up thinking it is normal to be in pain all the time or to be sick to our stomach trying to eat. It’s not.
“Our goal is simple: To be recognised as valuable members of society, deserving access to quality healthcare without immediate judgment.”
Hockenhull said all those with EDS wanted was understanding and the opportunity to navigate life with empathy and appropriate medical support.
“I was a child when my family started searching for answers if I had been diagnosed earlier maybe I wouldn’t have been suffering as much if I had known how to care and advocate for myself.
“It has been a silent struggle for so many of us and, with Steph’s passing, I think so many of us are ready to fight. It’s what she would’ve wanted.”
After she was also diagnosed with EDS, Aston quickly became the big sister she never had.
“I looked up to her. Despite how serious her illness was, she always took the time to reach out to me and ask how I was coping,” Hockenhull told the Herald.
Hockenhull said she wasn’t “fortunate enough to get to meet” Georgie Ferris before she passed.
“I was pretty shocked to hear about Georgie. Couldn’t believe it.”
Aston’s presence in Hockenhull’s life has left a lasting impression, she said.
“Despite facing so many setbacks and repeated disappointments, she had remarkable resilience. Her ability to maintain a positive outlook on life remained unwavering.
“Even when facing death, she embodied kindness and warmth.”
