Stephanie Aston: Woman dies aged 33 after doctors dismissed her horror EDS symptoms and accused her of faking it
A 33-year-old woman has died after doctors said her rare genetic disease was ‘all in her head’.
Stephanie Aston passed away at her home in Auckland, New Zealand, on September 1 after a long and public battle with Ehlers-Danlos Syndrome (EDS).
EDS is a rare genetic disorder that affects the connective tissues of the body and there are 13 different variants of the disorder.
The condition is considered an ‘invisible disease’ because patients often appear quite healthy despite experiencing excruciating symptoms, including severe migraines, dislocating joints, easy bruising, abdominal pain, iron deficiency, fainting and an abnormally fast heart rate.
Ms Aston revealed that her symptoms had been dismissed in 2016 by a doctor who thought she was just faking it.
Stephanie Aston, 33, died at her home in Auckland, New Zealand, on September 1 after a long and public battle with Ehlers-Danlos Syndrome (EDS)
She met the doctor after other surprised doctors referred her to Auckland Hospital.
The doctor told Mrs. Aston he believed she was not experiencing any illness at all and was instead making herself sick.
She said the misdiagnosis led to her being charged with self-harm, eating disorders, feigning fever, coughing and fainting, and even being placed under psychiatric supervision.
“I feel that my dignity has been robbed and my rights have been seriously violated,” Ms Aston told the newspaper NZ Herald.
After complaining to the Health and Disability Commissioner (HDC), Ms Aston said the diagnosis had further negative consequences for her health.
Meenal Duggal, the HDC’s deputy commissioner for complaints handling, ruled in May 2017 that it was not the agency’s role to reverse or confirm a disputed diagnosis.
The agency took no further action following the ruling.
Ms Aston’s story led to her becoming an idol for those suffering from EDS or similar invisible disabilities as she stood up for herself despite the debilitating condition.
She had also helped set up Ehlers-Danlos Syndromes New Zealand in 2017, an organization that supports people suffering from shape disorder.
EDS is considered “invisible” because patients often appear quite healthy despite experiencing excruciating symptoms, including severe migraines, dislocating joints, easy bruising, abdominal pain, iron deficiency, fainting, and an abnormally fast heart rate. Mrs Aston is pictured in hospital
Ms Aston (right) had become an idol for those suffering from Ehlers-Danlos Syndrome after her painful and public battle with the condition
“It is with great sadness that we have to announce the passing of Steph Aston,” the organization wrote on Facebook on Saturday.
‘Steph helped set up this association with me in 2017 and helped run it with me for many years until her health continued to deteriorate and was unable to help.
“She has also been a beacon to many in our community.
‘Until the end she wanted to help everyone and offer a listening ear. You will be sorely missed.
“I hope you can rest well now.”