A woman from New Zealand died at the age of 33 after doctors allegedly told her she was faking her illness.
For five years, Stephanie Aston suffered from Ehlers-Danlos Syndrome (EDS) - a genetic condition that affects skin, joints and blood vessel walls.
Stephanie passed away last Friday and questions are being asked of her 'appalling health care'.
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Chronic illness advocacy group, Ruby’s Voice, said the patient was misdiagnosed with 'factitious disorder', which is a mental health condition where she was accused 'of creating her own illness'.
“Hers is another tragic story of appalling health care, and the battle of being labelled with factitious disorder (all in your head),” the advocacy group wrote.
“Steph was one of five in 2018 who hoped that raising awareness through media would help. Unfortunately, it didn’t.
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“She was super-intelligent and completely sane. (She) had a wicked sense of humour, (and was) mischief, kind and generous.”
In 2018, Auckland doctors were said to have misdiagnosed Stephanie, who told the NZ Herald at the time: “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.”
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While she was still alive, Stephanie helped launch advocacy group Ehlers-Danlos Syndromes New Zealand.
CEO Kelly McQuinlan said: “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.
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“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.”
Taking to social media, one person wrote: “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.”
Another person added: “I’ve never forgotten how she was treated.
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“We are both under the same rheumatologist, and she was incredibly supportive of my battles for recognition and connecting with others.”
TYLA has contacted Auckland Hospital for comment.
Topics: Health, Mental Health
Anish Vij