"Remembering Stephanie Aston: A Tireless Advocate for Ehlers-Danlos Syndrome"

Stephanie Aston, a woman who fought against accusations of faking her debilitating illness, has tragically passed away at the age of 33. Aston, who resided in Auckland, New Zealand, became an advocate for patients' rights after doctors dismissed her symptoms and attributed them to mental illness. Her journey began at the age of 25 when she started experiencing symptoms of Ehlers-Danlos Syndrome (EDS), a group of inherited disorders that weaken connective tissues in the body. EDS is an extremely rare condition, affecting only one in every 5,000 people. The symptoms include fragile blood vessels, loose joints, abnormal scar formation, and stretchy skin that easily bruises. While there is no cure for EDS, patients can undergo treatments like physical therapy to manage their symptoms. Living with EDS requires individuals to adapt their lifestyles to protect their joints and prevent injuries. Aston sought medical help for her symptoms, which included severe migraines, joint dislocations, and easy bruising. However, she encountered disbelief and accusations from doctors, leading to her being placed on psychiatric watch. Aston's story highlights the significant issue of women being misdiagnosed or disregarded when seeking medical attention. Research shows that women often face challenges in receiving accurate diagnoses and appropriate care, and this can be attributed to the under-representation of women in medical research. Despite her struggles, Stephanie Aston will be remembered as a passionate advocate for those with Ehlers-Danlos Syndrome. She founded the Ehlers-Danlos Syndromes New Zealand society and remained active in supporting others with the condition until her passing. Her legacy will continue to inspire and provide guidance for the community she cared deeply about. Rest in peace, Stephanie Aston.