Stephanie Aston, 33, died at her New Zealand home on September 1 after a public battle with Ehlers-Danlos Syndrome (EDS) — a genetic disorder she was accused of faking. Stephanie had a family history of EDS, a serious disorder associated with connective tissues. Unfortunately, Stephanie was accused by her physician of faking her symptoms.

Instead of medical intervention, Aston was forcibly admitted to the hospital under psychiatric watch. Her physician accused her of having a “Factitious Disorder”. She was accused of deliberately bleeding herself. “I wasn’t even allowed to go to the toilet or bathroom by myself,” she told The New Zealand Herald.

Stephanie’s passing reminds us of the challenges faced by millions of rare disease patients who struggle every single day. Through this story, Clinakos Inc. wants to take the opportunity to recognize the work being done by countless individuals and organizations including patient groups, NGOs, Pharma & Biotech companies, physicians and above caregivers to support rare disease patients.

We would love to hear of your thoughts and stories. Do you know of others who struggled in a similar way? Any suggestions of how we can leverage new technologies including AI to help are welcome.