A 33-year-old New Zealand woman accused of faking debilitating symptoms has died of Ehlers-Danlos syndrome (EDS).
Stephanie Ashton, 33, died at her home in Oakland on September 1 New Zealand Herald References.
Aston became a patient rights advocate after doctors refused to take her EDS symptoms seriously and blamed them on mental illness. She was just 25 when these symptoms started in October 2015. At the time, she didn't know she had inherited her health condition.
EDS refers to a group of inherited disorders caused by gene mutations that weaken connective tissues, according to the National Institutes of Health (NIH). These tissues are responsible for many important functions and 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, supple, velvety skin that bruises easily, according to the NIH.
There are at least 13 different types of EDS, and conditions range from mild to life-threatening. EDS is extremely rare: Only one in 5,000 people have it. EDS patients can sometimes receive treatments that could help manage their symptoms—such as physical therapy—but there is no cure for the disease. People living with EDS often have to restructure their lives to learn how to protect their joints and prevent injury.
Ashton sought medical attention after her symptoms — which included severe migraines, abdominal pain, dislocated joints, easy bruising, iron deficiency, fainting, fast heart rate and multiple injuries — began in 2015, according to New Zealand Herald. She was referred to Auckland Hospital, where a doctor accused her of causing her own illness.
As a result of his accusations, Ashton was placed under psychiatric observation. He had to undergo a rectal exam and was accused of self-injurious behaviors. She was suspected of faking fainting, fever and coughing fits, and there were also indications that her mother had physically harmed her.
There was no basis for the doctor's accusations that her illness was caused by psychiatric problems, Ashton told the New Zealand Herald. “There was no assessment before that, no psychological consultation, nothing,” he said.
She eventually complained to the Auckland District Health Board and the New Zealand Health and Disability Commissioner. “I feel that my dignity has been taken away and my rights have been seriously violated,” she said.
Research shows that women are often much more likely to be misdiagnosed than men. A 2009 study of patients with symptoms of heart disease found that 31.3 percent of middle-aged women “received a mental health condition as the most certain diagnosis,” compared to just 15.6 percent of their male counterparts. Additionally, a 2020 study found that up to 75.2 percent of patients with endometriosis—a painful disorder that affects the tissue of the uterus—were misdiagnosed after they began experiencing endometriosis symptoms. Among these women, nearly 50 percent said they had a “mental health problem.”
One reason women's health conditions are often overlooked or misdiagnosed could come down to where the research is. A 2022 paper states that “women remain broadly underrepresented in the medical literature, sex and gender are under-reported and under-analysed in research, and misogynistic perceptions continue to permeate the narrative.” Women's pain, in particular, has been understudied: 70 percent of people with chronic pain are women, yet 80 percent of available pain studies have focused on men or male mice, according to Harvard Health Publishing.
Those who knew her say Ashton will be remembered for her advocacy. She started the Ehlers-Danlos Syndromes New Zealand society in 2017. The community honored Aston's legacy in a Facebook tribute posted after her death.
“It is with great sadness that we have to announce the passing of Steph Ashton,” it read. “He was … a beacon to many in our community. Hosting many events in Auckland over the years and running our support groups and helping to give direction to so many… Even to the end she was willing to help anyone and lend an ear. You will be greatly missed. I hope you are getting a good rest now.”