Tributes have poured in after Stephanie Aston, the young woman who publicly stood up for herself after being told she was faking her symptoms by doctors, has died.
Ehlers-Danlos Syndromes New Zealand described Aston as a “beacon” for those with the illness in a tribute to her on Facebook.
“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.”
The Herald wrote about Aston in 2018, after she spoke out when she was told the debilitating illness she experienced existed in her head by health professionals.
Ehlers-Danlos Syndromes New Zealand founder Kelly McQuinlan said Aston always maintained her compassion and was consistently thoughtful of others, despite what she was going through.
“She was incredibly supportive and still up for a laugh till the end. For those who were lucky to know her [they] would speak to her strength and resilience, along with their amazing, supportive and thoughtful friendships and connections.
“Regardless of her lack of medical care in NZ that she should have received a long time ago as a preventative to her untimely departure, she continued to have hope for anyone else who may be navigating the same systems that failed her.”
McQuinlan and Aston helped create the non-profit charity back in 2017, and McQuinlan said her legacy will continue to live on through the advocacy efforts they make to help enable systemic change within our failing health system.
“Her friends and family will miss her immensely.”
Facebook page Ruby’s Voice Trust, which highlights the death of another young woman after misdiagnosis, also wrote a tribute for Aston.
“Our beautiful friend Steph gained her wings on Friday.
“She was super intelligent and completely sane. Had a wicked sense of humour, mischief, kind and generous, and a lover of small people… auntie to so many.”
The post described Aston as a “blessed” presence in the world.
Advocates for EDS have long said that EDS patients notoriously struggled to get acknowledgement of their condition and this was traumatising.
“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 5 in 2018 who hoped that raising awareness through media would help. Unfortunately, it didn’t.”
“Thank you Steph. We love you.”
Aston was 25 flatting in Mt Albert, Auckland when the effects of Ehlers-Danlos syndrome [EDS] began to take hold in October 2015.
Like many adults with EDS, Aston did not know she had the inherited condition and each illness or injury over the years was treated by individual specialists.
Aston was diagnosed by three specialists with EDS, a genetic connective tissue disorder.
But an Auckland Hospital doctor, whom the Herald agreed to call Doctor A, suggested she was not seriously unwell and indicated she was causing her illnesses.
In a complaint to the Health and Disability Commissioner [HDC] in November 2016, Aston said she strongly disagreed with a factitious disorder diagnosis and believed it continued to have a detrimental effect on the care she received and the way she was treated.
This included rectal examinations, being on a psychiatric watch, accusations of eating disorders and self-harm, suggestions her mother was harming her and that she was faking fainting spells, coughing fits and fevers
International EDS expert Dr Heidi Collins previously told the Herald that psychiatric misdiagnoses were common among EDS patients and the challenge was understanding why some psychiatrists were “absolutely unwilling to see or accept an underlying physical issue”.