Advocates Living with EDS to Follow
Here are just a few of the advocates raising awareness about EDS, chronic illness and disability.
Please note, we are sharing these accounts as a resource to learn more about advocates living with various subtypes of EDS, including VEDS, cEDS, BCS, and hEDS. References or links to external resources, including digital creators, are provided for informational purposes only and do not constitute endorsement or recommendation.
Dani Medina
@the.dani.adventure she/her; VEDS • short life expectancy, big expectations🦋 • disabled model @zebedeetalent • AZ Accessibility 🌵♿️ • advocate • Yaqui • 🇵🇷 • motherhood & marriage
Dr. Cortney Gensemer, PhD
Science | Chronic Illness | Motherhood
Breaking down research on EDS, POTS, MCAS, ME/CFS & more
Abbey Phillipson
Izzy Kornblau, MS, CGC
Karina Sturm
#Journalist creating content in 🇩🇪 & 🇺🇸 about #EhlersDanlosSyndrome, #ChronicIllness and #Disability
Grace Nuhfer
@gracenuhfer she/her; usa paralympian
@zipswsd alum | northwestern
@opticaldelusionpod @voiceinsport mentor!