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.
As a busy professional, I became uncomfortably familiar with doctors at urgent care. Just before the start of the COVID-19 pandemic, I received my diagnosis and learned about my treatment options. I was driven to read and learn even more about primary immunodeficiency (PI) and discover how I could help advocate for others like me in the rare disease community. Doctors are taught to look for horses, not zebras, like those in the rare disease community when in medical school.
Before my diagnosis, I had never heard of primary immunodeficiency. I now understand that if someone experiences more than two sinus infections in a year, they should promptly consult a doctor to ensure their immune system is functioning correctly. Unfortunately, It is common for patients with PI to go ten years or more without diagnosis.
My treatment plan includes receiving biweekly immunoglobulin replacement therapy (IVIG), which is derived from plasma. This replaces the protective antibodies that my immune system is missing. I would be prone to repeated, recurring, persistent and severe infections without access to these treatments. These treatments have greatly improved my quality of life, and I am grateful that IVIG is available to patients.
~Ambrosia~
