Stephanie Aston, 33, passed away in her home in Auckland on 1 September, the New Zealand Herald reports.
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, according to the National Institutes of Health (NIH). These tissues are responsible for many important functions, and they support the skin, bones, blood vessels, and other organs.
Symptoms of EDS include fragile, small blood vessels; loose joints; abnormal scar formation; abnormal wound healing; and soft, stretchy, velvety skin that bruises easily, per the NIH.
There are at least 13 different types of EDS, and the conditions range from mild to life-threatening. EDS is extremely rare: Only one in every 5,000 people have it. Patients with EDS can sometimes receive treatments that might help manage their symptoms—such as physical therapy—but there is no cure for the illness. People who live with EDS often have to restructure their lives to learn how to protect their joints and prevent injuries.
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.
Research suggests women are often much more likely to be misdiagnosed than men. A 2009 study of patients with heart disease symptoms found 31.3 per cent of middle-aged women “received a mental health condition as the most certain diagnosis”, compared to just 15.6 per cent of their male counterparts. Additionally, a 2020 study found that as many as 75.2 per cent of patients with endometriosis—a painful disorder that affects the tissue of the uterus—had been misdiagnosed after they started experiencing endometriosis symptoms. Among those women, nearly 50 per cent were told they had a “mental health problem”.
One reason women’s health conditions are often ignored or misdiagnosed could come down to where the research stands. A 2022 paper states that “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”. Women’s pain, in particular, is especially under-researched: 70 per cent of people with chronic pain are women, yet 80 per cent of available studies on pain have focused on men or male mice, per Harvard Health Publishing.
Those who knew her say Aston will be remembered for her advocacy. She started the Ehlers-Danlos Syndromes New Zealand society in 2017; the community honoured Aston’s legacy in a Facebook tribute posted after her death.
“It is with much sadness that we have to announce the passing of Steph Aston,” it read. “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.”
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