The story of Nicole
“When you hear the sound of hooves, think horses not zebras.” This is a quote shared with doctors in training. A zebra in medical terms is a rare condition, but those of us with rare disease like primary immunodeficiency and other rare diseases know just how *real* zebras are, and we do exist!
Feb. 26 will mark five years since my CVID diagnosis, a true milestone! – and what five years it’s been. Starting with my treatments being done via IV at the hospital in interventional radiology during COVID, to an infusion center at a hospital, to a cancer center, to now doing them myself at home subcutaneously. To be honest it has been kind of lonely getting them done (especially through COVID) and being by myself.
When I first started this journey of doing them at home by myself, I wasn’t sure I would be able to it. I had so many questions.
– Would I be able to remember all the steps?
– Could I actually stick myself with a needle?
– What if I made a mistake?
– What if I had an allergic reaction and needed to use my EpiPen?
But guess what? Here I am two years later. And I’m doing it! Sure, there have been some setbacks. But just like getting diagnosed with a rare disease, you keep moving forward. Keep moving forward when you have questions. Keep moving forward when you’re frustrated. Keep moving forward into the unknown. And when you think you can’t. Keep. Moving. Forward.
My treatments are lifesaving and allow 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.
I began connecting with other members of the PI community after my diagnosis, as well 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!