We are delighted to share our most recent patient spotlight with Wendy, who lives with CVID and is a professional handcyclist and coach! Wendy was one of the first PI patients to start receiving immunoglobulin in the early 1970’s, and since then, she’s won the Boston Marathon twice, the New York City Marathon, and is a world champion ultra cyclist.
Read on to hear about how Wendy lives life to the fullest each day!
Please share a brief overview of your story.
I am one of the few PI patients that began receiving immunoglobulin back in the early 70’s. Since then, my life has been a roller coaster, but I have never stopped fighting. In addition to CVID, I also have other rare diseases that have led to being a full time wheelchair user. I have not let that slow me down. I am a full time professional handcyclist and coach. I have won the Boston Marathon twice, the New York City Marathon, and am a world champion ultracyclist. Last summer I became the first handcyclist to do the 925-mile Race Across the West. Watch the documentary, Shattered Expectations, about my journey as an athlete with PI coming soon to film festivals.
How and when were you diagnosed?
I have CVID. Although doctors knew shortly after birth that I had some form of PI disease and I was receiving IG therapy, I was not formally diagnosed with CVID until 2013.
How has treatment impacted your life?
Receiving regular treatment has allowed me to be fully engaged with life, writing new chapters every day, and exploring the outer limits of what is possible living with disabilities.
Why did you decide to start your Instagram page/share your story?
I try to share as much as possible. I want others to see that with the proper treatment and knowledgeable doctors that life is not all doom and gloom. Yes, there are always ups and downs, but we have so much that we are capable of and can give back to the world. As a child, I was written off by many doctors and it took me until adulthood to really take control of my life and not accept no for an answer.