Stephanie Aston, a courageous 33-year-old woman from Auckland, New Zealand, tragically passed away on September 1, 2023, after a prolonged and highly publicized struggle with Ehlers-Danlos Syndrome (EDS). This rare genetic disorder, affecting connective tissue, has long been considered an “invisible disease” due to its deceptive appearance of good health in sufferers, despite the excruciating symptoms they endure.
Stephanie’s journey was marked by medical dismissal and unwarranted accusations that she was “faking it,” making her story a powerful testament to the strength of the human spirit.
Ehlers-Danlos Syndrome is a complex condition with 13 distinct variants, and its symptoms range from severe migraines to dislocating joints, easy bruising, abdominal pain, iron deficiency, fainting, and an abnormally fast heart rate. Despite these debilitating symptoms, individuals with EDS often face skepticism from the medical community, as their outward appearance may not align with their internal struggles.
Stephanie Aston’s harrowing experience began in 2016 when a doctor, upon examining her, shockingly dismissed her symptoms as imaginary. This painful misdiagnosis was the catalyst for a heartbreaking cascade of events.
Stephanie’s ordeal intensified after she sought help at Auckland Hospital following referrals from other perplexed physicians. Astonishingly, the doctor she encountered not only refused to acknowledge her illness but accused her of self-harm and deception.
The misdiagnosis led to accusations of eating disorders, self-inflicted illnesses, and even placed Stephanie on psychiatric watch. Her dignity was stripped, and her rights were seriously breached by these unfounded allegations. As she bravely stated, “I feel like I have had my dignity stripped and my rights seriously breached.”
In her pursuit of justice, Stephanie reported her case to the Health and Disability Commissioner (HDC). However, in a disappointing turn of events, the HDC ruled in May 2017 that it was not their role to confirm or overturn disputed diagnoses, leaving Stephanie without the resolution she deserved.
Despite the immense challenges she faced, Stephanie Aston’s story became an inspiration to countless individuals grappling with Ehlers-Danlos Syndrome and similar invisible disabilities. She co-founded Ehlers-Danlos Syndromes New Zealand in 2017, an organization dedicated to supporting those affected by the disorder.
The organization recently mourned Stephanie’s passing, highlighting her selfless dedication to helping others. Even in the face of her own debilitating disorder, she remained keen to lend an ear and extend a helping hand. Her legacy as a beacon of hope for the EDS community lives on.
Stephanie Aston’s untimely death has left a void in the lives of many who knew her, both personally and through her advocacy work. Her courage, resilience, and determination in the face of an often heartless medical system serve as a poignant reminder of the need for greater awareness and understanding of invisible diseases like Ehlers-Danlos Syndrome.
As we bid farewell to this remarkable woman, we honor her memory and pledge to continue the fight for justice and compassion for all those battling unseen illnesses. Stephanie Aston may be gone, but her legacy of strength and advocacy will live on, inspiring future generations to stand up and speak out against medical discrimination.
