A 33-year-old New Zealand woman who was accused of faking debilitating symptoms has died of Ehlers-Danlos Syndrome (EDS).
Stephanie Aston became an advocate for patients' rights after doctors refused to take her EDS symptoms seriously and blamed them on mental illness. She was just 25 when those symptoms began in October 2015. At the time, she did not know she had inherited the health condition.
EDS refers to a group of inherited disorders caused by gene mutations that weaken the connective tissues. There are at least 13 different types of EDS, and the conditions range from mild to life-threatening. EDS is extremely rare.
Aston sought medical help after her symptoms—which included severe migraines, abdominal pain, joint dislocations, easy bruising, iron deficiency, fainting, tachycardia, and multiple injuries—began in 2015, per the New Zealand Herald. She was referred to Auckland Hospital, where a doctor accused her of causing her own illness.
Because of his accusations, Aston was placed on psychiatric watch. She had to undergo rectal examinations and was accused of practising self-harming behaviours. She was suspected of faking fainting spells, fevers, and coughing fits, and there were also suggestions that her mother was physically harming her.
There was no basis for the doctor’s accusations that her illness was caused by psychiatric issues, Aston told the New Zealand Herald. “There was no evaluation prior to this, no psych consultation, nothing,” she said.
She eventually complained to the Auckland District Health Board and the Health and Disability Commissioner of New Zealand. “I feel like I have had my dignity stripped and my rights seriously breached,” she said.
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Source: The Independent, 6 September 2023