We're delighted to share our newest patient spotlight with Nicole! Nicole was diagnosed with CVID in her late thirties, and has since used her platform to spread awareness and share insights about living with PI. Her positivity and dedication to improve the lives of others is inspiring!
Please share a brief overview of your story about living with Primary Immunodeficiency.
My journey to discovering PI began in my early twenties and ended in my late thirties – nearly twenty years. At 39, timed with the start of the COVID pandemic, I was diagnosed with Common Variable Immunodeficiency (CVID) and dove head-first into the new world of Primary Immunodeficiency (PI) and rare disease.
How and when were you diagnosed? Which specific PI do you have?
I was 39 years old when I was diagnosed with Common Variable Immunodeficiency (CVID). It was a six-month long sinus infection that eventually led to my diagnosis. However, it was 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 dealing with the effects of a variety of GI issues plaguing me most of my adult life that were contributing factors.
How has treatment impacted your life? How did you decide this was the correct treatment for you?
I switched from IVIG at a local cancer center to administering them myself at home, which allows me more control and flexibility, and allows me to be involved in my family’s life, to be active and present in activities for our daughter.
Do you share your story with others online? If so, tell us what made you decide to do so.
Yes, I share both on my personal and professional pages. I bring my whole self to everything I do. Just like being a mom, having PI is part of me. Being able to use my platform to share insight into what life is like, to create awareness, and to make connections allows me to keep bringing authenticity to all I am a part of.
If there's anything else you'd like to share with us, please do so below.
I began connecting with other members of the PI community and learning 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 me in the PI and rare disease community!