I Had to Be My Own Doctor: Ambrosia’s Journey to a PI Diagnosis

Ambrosia Grant
2023 Infusion Access Foundation Champion
A story about living with Primary Immunodeficiency

Ambrosia’s journey to a diagnosis truly began when she took her health into her own hands and self-referred to an allergist/immunologist. After multiple visits and exhaustive testing, she learned the startling truth: her body does not produce the essential antibodies others have to fight off common skin and respiratory infections.

As a busy professional, Ambrosia had become uncomfortably familiar with the inside of urgent care centers, constantly battling the “standard” cycle of sinus infections, bronchitis, strep throat, and recurring skin issues. For years, she was a patient lost in a system looking for “horses” rather than “zebras”—the rare disease cases often overlooked in medical school.

Receiving her diagnosis of Primary Immunodeficiency (PI) just before the start of the COVID-19 pandemic changed everything. It didn’t just give her a treatment plan; it gave her a purpose. Today, Ambrosia is a dedicated advocate, driven to share her knowledge and help others in the rare disease community navigate the hurdles of diagnosis and treatment. She is a powerful reminder that being a “zebra” means having the strength to stand out and the courage to advocate for the care you deserve.

My journey to diagnosis with primary immunodeficiency (PI) truly began when I self-referred myself to an allergist/immunologist. After multiple visits and tests, I learned that my body does not produce the antibodies that others have to help fight common skin and respiratory infections. Like many patients with PI, I was often sick with sinus infections, bronchitis, strep throat, and recurring skin infections.