Decades to Get a Diagnosis
Gastrointestinal Disease, Immune Disease, Mental Health, Neurological Disease, Reproductive Disease, Skin Disease
Issues and Challenges
Carter has encountered: Access to Expert Providers, Access to Medicine, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Copay Accumulator, Disability, Discrimination (nonmedical), Invisible Illness, Transparency in Health Care
My introduction to the disability community was through my struggles with bipolar disorder, OCD, anxiety, and other then-undiagnosed neurodivergence.
As I connected with the community, I learned skills to advocate for myself as a patient, legislative advocate, and community member. I had had Ménière’s disease for several years and learned I was born with Ehlers-Danlos syndrome, but didn't get diagnosed with either until 20 years old.
From there, I started getting diagnosed with many chronic EDS comorbidities including POTS, gastroparesis, MCAS, and thoracic outlet syndrome to name a few, and I started connecting with more people in these patient communities.
My Motivation and Inspiration
Beyond awareness, we need understanding, acceptance, and more resources dedicated to self-care, early intervention, and treatments.