Woman, 33, dies from rare disorder after 'doctors told her illness was all in her head'

A woman from New Zealand who was accused of faking symptoms of a debilitating condition has died aged 33.

Stephanie Aston died on 1 September at her Auckland home. She had become an advocate for patients after doctors did not take her symptoms seriously, instead blaming them on mental illness.

Ehlers-Danlos Syndromes New Zealand/Facebook

Aston was 25 years old when her symptoms began in October 2015. She was not aware at that time that she had inherited EDS.

EDS, or Ehlers-Danlos Syndrome, is a genetic condition which can cause a weakening of connective tissues. These fulfil a very important function in the body as they support skin, blood vessels and bones as well as major organs.

Symptoms of the condition include things like loose joints, abnormal scar formation and wound healing, and small blood vessels. It can also lead to skin with a soft, velvety texture which bruises easily.

EDS affects about one in every 5,000 people, and there are at least 13 different kinds of it. They range in severity from relatively mild to life-threatening.

Aston's symptoms included easy bruising, severe migraines, joint dislocations, abdominal pain, iron deficiency, fainting, tachycardia, and multiple injuries.

She was referred to hospital, where a doctor allegedly accused her of faking her symptoms.

As a result of these accusations, Aston was placed on psychiatric watch. She was accused of self-harming and had to undergo rectal examinations.

Aston was also suspected of faking fainting, coughing fits, and fever, and there were suggestions that her mother had been physically harming her.

Jackyenjoyphotography / Getty

She told the New Zealand Herald that there had been zero basis for the psychiatric watch, telling the paper: "There was no evaluation prior to this, no psych consultation, nothing.”

There is research suggesting that women are far more likely than men to be misdiagnosed. This is reflective of female bodies being under-represented in clinical research.

A paper from 2022 says: “Females remain broadly under-represented in the medical literature, sex and gender are poorly reported and inadequately analysed in research, and misogynistic perceptions continue to permeate the narrative”.

There are also common misconceptions about pain. These misogynistic assumptions include that women, and women of colour in particular, do not 'feel' pain in the same way, or are somehow more resilient to it.

An announcement from Aston's family confirmed that she had passed away.

It read: “It is with much sadness that we have to announce the passing of Steph Aston.

“She has…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…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.”

UNILAD has contacted Auckland Hospital for comment.