Doctors are human and as such, can make potentially fatal mistakes. On September 1, 2023, 33-year-old Stephanie Aston died after battling Ehlers-Danlos syndrome. At one time, Stephanie was accused of faking this invisible disease.
Her EDS community in New Zealand believe that her death was brought on in part because of this misdiagnosis that prevented her from receiving the proper medical care. They vow to speak up about the disease in her name so this never happens again.
While she was still alive, Stephanie used her own voice to speak out about her horrible experience. In 2018, a doctor diagnosed her with factitious disorder which was previously known as Munchausen syndrome. This is essentially when someone makes themselves appear sick or gets sick on purpose.
Stephanie had EDS and not factitious disorder. She even had a family history of EDS, which her doctor either ignored or overlooked. Most of the time, EDS impacts a person’s connective tissue. It is believed Stephanie had the more serious vascular kind, which can cause ruptures of blood vessels, intestines, or uterus.
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Stephanie reported the doctor to the Auckland District Health Board. "I feel like I have had my dignity stripped and my rights seriously breached," Stephanie told The New Zealand Herald. "Due to my extremely low hemoglobin levels, my specialist feels I am at serious risk of dying."
Stephanie was involuntarily placed in a psychiatric ward. "I was told because I had been a midwife I must be stealing needles from the hospital and bleeding myself through my vagina, my bowel or my throat," she explained. "I wasn't even allowed to go to the toilet or bathroom by myself.”
Norma Hockenhull is among those who want to speak out on Stephanie’s behalf. “It has been a silent struggle for so many of us and, with Steph’s passing, I think so many of us are ready to fight,” she said. “It’s what she would’ve wanted. There are no words to accurately describe how I felt watching this all unfold. You are never prepared to see someone you care about die, especially at such a young age."
Norma puts the blame on the doctors responsible for Stephanie’s care. “Steph was an accomplished young woman who had her whole life in front of her,” she said. “With early intervention and a comprehensive medical team, I believe she would still be here. She would’ve had a chance.”
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