Voices Across America

My Patient Story

Melissa

State: Washington
Congressional District:

Diseases

Blood Disease, Bone / Muscle Disease, Chronic Pain, Eye Disease, Genetic Disease, Immune Disease, Neurological Disease, Rare Disease, Skin Disease

Issues and Challenges

Melissa has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medical Records Access, Rare / Underserved Disease, Surprise Billing, Transportation, Caregiving, Copay Accumulator, Disability, Gaslighting, Medical Discrimination, Prior Authorization, Step-Therapy / Fail First, Transparency in Health Care

My Story

Hi everyone, my name is Melissa and I'm a two-time stroke survivor living with rare disease and disability.

Several years ago, I had a health crisis and became permanently disabled. Medical error and provider bias significantly delayed my diagnosis and treatment, ultimately leading to a poorer outcome. Since then, I’ve dedicated significant time and energy to advocating for patients with the hope that we can intervene in these cycles of a broken system.

Because I felt alone during my diagnostic process without a disease community to relate with, I started Zebra Zoomies (zebrazoomies.com). It's a small non-profit video meetup for complicated patients. Virtual meetups allow us to stay connected even when we're not able to leave home.

In between disease flares, I enjoy the fresh air outdoors in Washington State with my two small dogs.

My Motivation and Inspiration

Patients deserve help from a healthcare system that doesn’t ghost them if they can’t be handled in a 20 minute time slot. (I have literally been told, “I can’t afford to see you,” with private insurance.)

Patients deserve help from a healthcare system that measures success as high-quality days lived versus how many services are performed on them.

Patients deserve a healthcare system that centers their voice.

That sentiment extends to health tech, where I work professionally. Currently I'm the Head of User Experience for Karius, an infectious disease diagnostics company.

I'm aiming to contribute to a future where medical practitioners and patients get back to what’s most important: developing a trusted relationship and sharing in decision-making.

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