The tragic death of Stephanie Aston: Woman, 33, dies after doctor accused her of 'faking' rare disorder
Stephanie Aston lost her struggle with Ehlers-Danlos Syndrome (EDS) after a protracted period of illness
AUCKLAND, NEW ZEALAND: Back in 2016, a 33-year-old lady from Auckland, New Zealand who had a rare disorder, was sent home after being informed by a doctor that her condition was "all in her head."
On September 1, Stephanie Aston lost her struggle with Ehlers-Danlos Syndrome (EDS) after a protracted period of illness.
There are 13 main subtypes of the rare genetic disorder EDS, which affects the connective tissue in the body.
As a result, a patient suffers from terrible symptoms, which can include severe migraines, dislocating joints, bruising easily, stomach pain, anemia, fainting, and an unusually rapid heartbeat. The rare disorder is also sometimes referred to as the "invisible disease" by sufferers.
Stephanie Aston's doctor disregarded her symptoms in 2016
Before she died, Aston revealed that a doctor in 2016 had disregarded her symptoms, believing that her incapacitating disease was merely a figment of her imagination.
Later, three other experts gave Aston their diagnoses of EDS, a genetic connective tissue illness.
She uses the alias "Doctor A" to refer to a doctor at Auckland Hospital who said she was not gravely ill and claimed she imagining her symptoms, according to The NZ Herald.
Stephanie Aston's death has shocked the EDS community
Not much has changed with regard to doctors' attitudes, according to Kelly McQuinlan, founder of Ehlers-Danlos Syndromes New Zealand, as reported by News.com.au. But there is no doubt that Aston's death has shocked the EDS community.
She said, "A lot of people are feeling very lost. I think most people in these rare positions or invisible illnesses definitely experience setbacks and disbelieving because things can't be seen but really the clinical symptoms are there that are being ignored."
Stephanie Aston hailed as 'beacon' for EDS patients
McQuinlan in a Facebook tribute to Aston called the deceased woman a "beacon" for individuals suffering from the condition.
"Most people in our community have experienced some form of sort of doctors not believing them or questioning their diagnosis which is extremely hard," she wrote.
"When they see someone in their community pass away, the first thing they think is 'What if my care is not looked after? What's going to happen to me?" she added.
"At the end of the day, if symptoms aren't managed correctly, anyone can get sick enough that they will pass away," she concluded.
Stephanie Aston helped set up EDS non-profit in 2017 to boost advocacy
The non-profit organization, Ehlers-Danlos Syndromes New Zealand, was founded in 2017 by McQuinlan and Aston. Their advocacy work went into supporting structural change within the healthcare system, and "will continue to carry on her legacy," McQuinlan said.
She remarked, "Our condition is ignored for far too long and then sometimes that impact is permanent."