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11th Sep 2023

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

Joseph Loftus

The disorder is considered an ‘invisible disease’

A woman has died at the age of just 33 after doctors told her her rare genetic illness was “all in her head”.

Stephanie Aston died at her home in Auckland, New Zealand on September 1 after a long battle with Ehlers-Danlos Syndrome (EDS).

EDS is considered to be an ‘invisible disease’ as sufferers often look healthy despite experiencing excruciating symptoms which include severe migraines, easy bruising, abdominal pain, iron deficiency, fainting, an abnormally fast heart rate, and dislocating joints.

Ms Aston revealed that in 2016 her symptoms were dismissed by a doctor who thought she was faking her symptoms.

The doctor told Ms Aston he believed she wasn’t experiencing any illness at all and was instead causing herself to be sick.

Her misdiagnosis led Ms Aston to being accused of self-harm, eating disorders, faking fevers, and even being placed on a psychiatric ward.

Speaking to the NZ Herald, Ms Aston previously said: “I feel like I have had my dignity stripped and my rights seriously breached.”

Ms Acton’s story subsequently went viral leading to her becoming a martyr figure for those suffering with EDS or similar invisible disabilities.

She was also a huge part of forming Ehlers-Danlos Syndromes New Zealand in 2017.

Writing to Facebook on Saturday, the organisation wrote: “It’s with much sadness that we have to announce the passing of Steph Aston.

“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.

“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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