Stephanie Aston sought assistance for many years as her health declined, but rather than receiving answers, she was allegedly accused of bringing her illness upon herself before passing away at the age of 33.
Stephanie Aston, hailing from New Zealand, first pursued medical attention at 25 after suffering from symptoms such as intense migraines, abdominal discomfort, fainting episodes, and frequent injuries.
Years later, after finally obtaining a diagnosis for a rare condition, she tragically died at her home in Auckland on September 1, 2023, at the age of 33.
Doctors reportedly questioned her health status.
When Aston first sought help, she was directed to Auckland Hospital.
There, as reported by The New Zealand Herald, a physician allegedly accused her of inducing her own illness.
Reports indicate that Aston was placed under psychiatric observation and underwent rectal examinations. She was also reportedly accused of self-harm and suspected of fabricating symptoms such as fainting spells, fevers, and coughing fits. At one point, there were concerns that her mother might have been physically harming her.
Unfortunately, the symptoms Aston was experiencing were undeniably genuine.
Her family later asserted that warning signs were consistently ignored while her physical health continued to decline.
Aston finally got the answers she had been seeking.
Later, Aston was diagnosed with Ehlers-Danlos Syndrome, commonly known as EDS.
As per the NHS, EDS is a collection of inherited disorders that impact connective tissue throughout the body. Symptoms may include fragile skin, dizziness, easy bruising, and joint instability. There are 13 variations of the condition, which can range from mild to potentially life-threatening.
In 2016, Aston received a diagnosis of classical EDS after consulting with rheumatologist Dr. Fraser Burling, who is reportedly New Zealand’s only specialist in EDS.
In an interview with The New Zealand Herald in 2018, Aston expressed that being dismissed by doctors felt like a violation of her dignity.
Her diagnosis was later validated by two geneticists in New Zealand, yet Auckland Hospital allegedly continued to disregard the condition. Due to suspicions of self-harm, Aston was reportedly denied a permanent intravenous port for blood transfusions needed for her severe anemia.
Became a source of support for others
Despite her own challenges, Aston emerged as a well-known and respected figure in the EDS community.
In 2017, she played a key role in establishing Ehlers-Danlos Syndrome New Zealand and openly shared her journey living with the condition, along with the obstacles she encountered while seeking treatment.
After the news of her passing, heartfelt tributes flooded in online.
A Facebook post referred to Aston as a “beacon” who dedicated years to assisting others.
“Right up to the end, she was eager to support anyone and listen. You will be greatly missed. I hope you find peace now.”
