Stephanie Aston, a 33-year-old woman from New Zealand, has died after living for years with a serious genetic condition that doctors failed to recognise. She passed away at her home in Auckland on September 1.
Her health problems began in her mid-20s. She suffered ongoing pain, joint dislocations, fainting, migraines, heart problems, and repeated injuries. At the time, she did not know she had inherited Ehlers-Danlos syndrome, a rare condition that weakens the body’s connective tissue and can affect many organs.
Instead of receiving proper medical care, Stephanie said doctors accused her of exaggerating or making up her symptoms. Her illness was blamed on mental health issues, and she was placed under psychiatric observation. She later said this happened without a full or appropriate mental health assessment.
Despite her declining health, Stephanie became an advocate for people with rare and misunderstood conditions. She helped others who felt ignored or dismissed by the healthcare system, offering support and understanding based on her own experience.
Her family described her as caring and selfless. They said she continued helping others for as long as she could. Her story has raised serious concerns about how physical illnesses—especially in women—can be overlooked, and why listening to patients remains critical.