I've lived with Vascular Ehlers-Danlos Syndrome and POTS nearly all my life but was only diagnosed at 35 years old following a severe decline which landed me in a wheelchair. I've struggled over the years with these syndromes and with each time was a further loss of abilities. In 8 years practicing as a Registered Nurse, I struggled to thrive whilst my disease processes fulminated, undiagnosed and untreated. Through intensive research on my own case and an injury disabling me from practicing as a nurse, my own self-advocacy led me to diagnosis and now my goal is to raise disease awareness and help others struggling within the medical system for proper diagnosis and treatment.
Best Kept Secret Nominee
I’m a Patient Leader