A 33-year-old New Zealand woman who was accused of faking her illness has died of Ehlers-Danlos Syndrome (EDS). According to the New Zealand Herald report, Stephanie Aston, 33, died at her home in Auckland on September 1.
Ms Aston became an advocate for patients right after she was told she was faking her EDS symptoms by doctors and blamed them on mental illness. Ms Aston was just 25 when those symptoms began in October 2015. At the time, she did not know she had inherited the health condition, The Independent reported.
According to the National Institutes of Health (NIH), EDS is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels, and other organs. EDS usually affects your skin, joints and blood vessel walls. Symptoms include Loose joints, fragile, small blood vessels, abnormal scar formation and wound healing, and soft, velvety, stretchy skin that bruises easily.
As per NIH, there are several types of EDS. It can range from mild to life-threatening. About 1 in 5,000 people has EDS. There is no cure. People with EDS can manage symptoms through treatment, often with medicines and physical therapy.
According to the New Zealand Herald, Ms Aston reached out to doctors after her symptoms- which included severe migraines, abdominal pain, joint dislocations, easy bruising, iron deficiency, fainting, tachycardia, and multiple injuries. She was referred to Auckland Hospital, where a doctor accused her of faking her symptoms.
Because of this accusation, she was placed on psychiatric watch. In fact, she had to undergo rectal examinations and was accused of practising self-harming behaviours. She was also suspected of faking fainting spells, fevers, and coughing fits.
Ms Aston was diagnosed by three specialists with EDS, a genetic connective tissue disorder.
Ehlers-Danlos Syndromes New Zealand founder Kelly McQuillan said not much has changed since 2018, but Aston’s death has shaken the EDS community, according to the New York Post.
“A lot of people are feeling very lost,” she said.
“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.”