Here’s Stephanie Aston’s heartbreaking journey with Ehlers Danlos Syndrome (EDS) a story that sheds light on the challenges of living with an ‘invisible disease.’ Let’s explore her battle.
In Auckland, New Zealand, a 33-year-old woman named Stephanie Aston passed away on September 1 due to complications related to Ehlers Danlos Syndrome (EDS), a rare genetic disorder affecting connective tissue.
This heartbreaking loss highlights the challenges faced by individuals with EDS, often referred to as an “invisible disease” due to its deceptive outward appearance of health.
A Battle Against a Misdiagnosis
Stephanie Aston’s journey with EDS was marked by misdiagnosis and skepticism from medical professionals. Despite being diagnosed with EDS by three specialists, she encountered a doctor at Auckland Hospital, referred to as “Doctor A,” who dismissed her symptoms and implied that her illness was imagined. This encounter with medical disbelief is a distressing commonality among EDS patients, leading to inadequate care and understanding of their condition.
Understanding Ehlers Danlos Syndrome
The founder of Ehlers-Danlos Syndromes New Zealand, Kelly McQuinlan, emphasized that not much has changed in terms of medical skepticism since 2018.
Stephanie Aston’s tragic passing has sent shockwaves through the EDS community, leaving many feeling lost and fearful for their own care. McQuinlan described Aston as a “beacon” for those with EDS, highlighting her role in advocating for better recognition and support for the condition.
Advocacy and Legacy
Stephanie Aston, alongside Kelly McQuinlan, established a non-profit charity in 2017 to raise awareness about EDS and drive systemic change within the healthcare system.
McQuinlan emphasized the enduring legacy of their advocacy work, aiming to ensure that individuals with EDS receive the care and understanding they deserve.
The lack of awareness and delayed recognition of EDS can have dire consequences, underlining the pressing need for improved medical awareness and support for rare and “invisible” illnesses like EDS.
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