Lupus – dead woman walking
Chronic Pain, Immune Disease, Mental Health, Migraine, Neurological Disease, Rare Disease, Skin Disease
Issues and Challenges
Wanda has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Rare / Underserved Disease, Surprise Billing, Caregiving, Copay Accumulator, Disability, Discrimination (nonmedical), Financial Assistance, Housing, Invisible Illness, Job Insecurity / Loss, Medical Discrimination, Premium Payments, Step-Therapy / Fail First, Transparency in Health Care, Underserved Community
I am a dead woman walking with an incurable disease, lupus. As a fourteen-year survivor of chronic and rare diseases, I use my voice & pain to change the narrative, promote patient engagement, highlight concerns/policies on patient-based committees, and shape legislative action through advocacy as my body allows. Using my agency, I share my story about my life as a patient and caregiver to help give back to others by spending my time as a facilitator, author/spoken word creative, motivational virtual speaker, and advocate.
My Motivation and Inspiration
My passion or FOMO is to inspire and share my story with others until there's a cure, access to medical care, health equality, and to dispel stigmas in our community for anyone diagnosed with chronic, mental health, and rare diseases. If the altered life that I now live helps comfort, brings hope and support, inspires medical research, impacts health care legislation, or crafts a Bill on behalf of anyone who has ever been a patient or caregiver, my life's purpose will be fulfilled. My legacy is to make a lasting imprint in society to compassionately impact humanity for future generations.