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New Zealand woman dies after doctors said she was faking her illness

New Zealand woman dies after doctors said she was faking her illness
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Read Time:3 Minute, 49 Second

A 33-year-old New Zealand woman, who was told by doctors that she was faking her illness, has died.

Stephanie Aston passed away last Friday after a years-long battle with Ehlers-Danlos Syndrome (EDS), a genetic condition which attacks connective tissues in the body, but which she was previously told was “all in her head”.

There are 13 known variations of the condition which can cause bleeding, loose joints, chronic pain, and put patients at constant risk of severe injury.

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Vascular and organ rupture are the most feared and fatal complications of EDS, according to researchers at Darnall Army Medical Centre, who said that a “proper diagnosis” of EDS is “essential” to the wellbeing and survival of affected patients.

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“Our beautiful friend Steph gained her wings on Friday,” chronic illness advocacy group Ruby’s Voice said.

The advocacy group for Ruby Hill, whose fatal Gastroparesis had been labelled as anorexia and psychological, wrote: “Hers is another tragic story of appalling health care, and the battle of being labelled with factitious disorder (all in your head).”

“Steph was one of five in 2018 who hoped that raising awareness through media would help. Unfortunately, it didn’t.”

“She was super-intelligent and completely sane. (She) had a wicked sense of humour, (and was) mischief, kind and generous.”

Steph Aston died after a years-long battle with Ehlers-Danlos Syndrome, which she was told was ‘all in her head’. Credit: Facebook

While bleeding was a common symptom experienced by Aston, she was misdiagnosed with factitious disorder — a mental health condition characterised by fabricating illness for sympathy — by Auckland doctors who also said she was harming herself, she told the NZ Herald in 2018.

She told the outlet: “That label has destroyed my life.”

“It has destroyed my ability to access medical care, to be treated fairly — it has resulted in really horrific treatment within the hospital system.

“It’s a label that people read, and they judge you before they’ve even met you, and there’s nothing you can do about it.”

Several specialists confirmed her EDS diagnosis, and three other psychiatrists confirmed she was mentally sound, the NZ Herald reported, adding that she disputed her factitious disorder diagnosis to the Health and Disability Commissioner in 2016.

7NEWS.com.au has contacted the Auckland District Health Board for comment.

‘A beacon for many in our community’

Aston helped launch the advocacy group Ehlers-Danlos Syndromes New Zealand with the society’s CEO Kelly McQuinlan.

McQuinlan wrote on Sunday: “Steph helped set this society up with myself back in 2017 and helped run it with me for many years until her health declined further and couldn’t continue helping.”

“She has also been a beacon for many in our community. Hosting multiple events in Auckland throughout the years and being active in our support groups and helping give direction to many, including myself.

“Even until the very end, she was keen to help anyone and lend an ear. You will be sorely missed. I hope you rest well now.”

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Tributes have continued to flow for Aston, whose community includes many people who are also suffering from “invisible” conditions, and campaigning for awareness of them.

“So sad to hear she has passed. She was a brave soul and never had the care she so deserved. I have had dealings with the doctor involved, and I understand how unfairly she was treated,” one person wrote on social media.

“She has done so much and given strength to others through her courageous fight.”

Another person wrote: “I’ve never forgotten how she was treated. We are both under the same rheumatologist, and she was incredibly supportive of my battles for recognition and connecting with others.”

“Fly high, Steph, on wings of gossamer… You mattered, and you left a legacy that certainly will never be forgotten. My condolences to all who loved and treasured you.”

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