The story of Nicole
My name is Nicole and I’m a member of the primary immunodeficiency (PI) and rare disease community in Pittsburgh, Pennsylvania. My journey to discovering I have PI began in my early twenties and ended in my late thirties – nearly twenty years. Twenty years of always being sick with some sort of sinus infection, developing bronchitis more frequently, realizing the pain of ear infections as an adult, and compounded with the effects of a variety of GI issues most of my adult life. At 39, timed with the start of the COVID pandemic (talk about timing!), I was diagnosed with Common Variable Immunodeficiency (CVID) and dove head-first into the new world of Primary Immunodeficiency (PI) and rare disease.
As a treatment for Common Variable Immunodeficiency (CVID) I receive immunoglobulin replacement therapy (IVIG) derived from plasma, every month at a cancer center in Pittsburgh, replacing the protective antibodies that are missing in my immune system. Without these treatments, I would be prone to recurring and severe infections. I will need to have IVIG treatments every, single, month for the rest of my life. The IVIG allows me to be involved in my family’s life, to be active and present in activities for my daughter and it also keeps me safe and healthy to live my daily life.
Through volunteering with the Immune Deficiency Foundation, I began to connect with other members of PI community, as well learn about how I can use my voice and experience to advocate for others with rare diseases like PI. All the steps I’ve taken on my personal journey have led me to where I am now — in a place to be able and equipped to give back, advocate and make a difference for others like myself in the PI and rare disease community!