Stephanie Aston sought help for years as her health deteriorated, but instead of answers, she was reportedly accused of making herself ill before dying at the age of 33.
Stephanie Aston from New Zealand first sought medical care at age 25 after experiencing symptoms including severe migraines, abdominal pain, fainting spells and repeated injuries.
Years later, after finally receiving a diagnosis for a rare condition, she died at her Auckland home on September 1, 2023, aged 33.
Doctors reportedly questioned her condition
When Aston initially sought help for her condition, she was referred to Auckland Hospital.
There, according to The New Zealand Herald, a doctor allegedly accused her of causing her own illness.
Reports claim Aston was placed under psychiatric watch and subjected to rectal examinations. She was also allegedly accused of self-harming and suspected of faking symptoms including fainting spells, fevers and coughing fits. At one stage, concerns were reportedly raised that her mother may have been physically harming her.
Sadly, the symptoms Aston was experiencing were very real.
Her family later claimed warning signs were repeatedly overlooked while her physical condition continued to deteriorate.
Aston finally received answers
Aston was later diagnosed with Ehlers-Danlos Syndrome, EDS for short.
According to the NHS, EDS is a group of inherited disorders that affect connective tissue throughout the body. Symptoms can include fragile skin, dizziness, easy bruising and joint instability. There are 13 forms of the condition, ranging from mild to potentially life-threatening.
Aston was diagnosed with classical EDS in 2016 after meeting rheumatologist Dr. Fraser Burling, reportedly New Zealand’s only EDS specialist.
Speaking to The New Zealand Herald in 2018, Aston said the experience of being dismissed by doctors felt as though her dignity had been breached.
Her diagnosis was later confirmed by two New Zealand geneticists, but Auckland Hospital reportedly still refused to acknowledge the condition. Because doctors allegedly suspected self-harm, Aston was reportedly denied a permanent intravenous port for blood transfusions related to severe anemia.
Became a source of support for others
Despite her own struggles, Aston became a familiar and respected figure within the EDS community.
She helped launch Ehlers-Danlos Syndrome New Zealand in 2017 and publicly shared both her experience living with the condition and the difficulties she faced while seeking treatment.
Following news of her death, tributes poured in online.
One Facebook post described Aston as a “beacon” who spent years helping others.
“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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