Every case has a story unique to our individual souls that creates a wonderful puzzle piece. I was just an ordinary middle schooler finishing eighth grade in 2012. While the rest of my class went on our end-of-the-year trip to Disney, my twin and I stayed back with other classmates due to unforeseen circumstances. I am not sure if it was a sign from above or just pure luck, but whatever it was, I believe it saved my life. It might sound cliché, but by some miracle, I am here today telling my story in a way I feel honored to be able to do.
After a life-threatening emergency related to my cycle led me to the children's intensive care unit, I was diagnosed with Von Willebrand Disease (VWD) Type 1. I thank my school nurse and teachers who were able to test my iron levels and register how pale and weak I was, but most importantly, I want to share the importance of recognizing menstrual complications as a red flag for bleeding disorders, because they are more common than they are shared to be.
Once I was diagnosed with VWD, I was given a nasal spray called Stimate, which worked as a treatment. Unfortunately, after it was recalled a few years ago, I have no longer been able to get this treatment. This puts me and others with my condition at serious risk. I routinely struggle to be my own self-advocate with pharmaceutical companies and insurance companies to try to get them to understand that my menstrual cycle is detrimental. I am a survivor of that twice now.
Never did I think I would receive two blood transfusions before the age of twenty-seven, for something my body was designed to do. I wish these companies would understand the struggles I face and how much they can affect my daily life. This is what I walk. I walk to help bring about a future with improved treatments and access to care that would be so beneficial to me and so many others.
In 2025, my friends and I did my first Unite Walk with the New York City Hemophilia Chapter. Here, my team, Bleeding Hearts, was born! Coming from Connecticut, some of us were nervous and some excited for new opportunities to arise. One of our team members, Dom DeGennaro, and his family are from Queens, NY, and so we have joked that he would be our tour guide, which he gladly accepted. For my first Walk, I felt like I was welcomed with open arms from the community.
One of the pharmaceutical representatives at a booth was an absolute delight and said “I know we are in allergy season, and so with that being said, I have supplies for anyone who gets a nosebleed to stop it.” This is the love we need as a community - and I truly felt at home. This is the true love our community needs. Other booths had fanny packs and cookies, and booklets and pamphlets about their medications and other resources for all members of the bleeding disorder community. This showed me a sense of community I could never describe.
We’re coming back to the Unite Walk again this year to show others the love and support that was shown to me. We’re walking to show others that they are not alone. Everyone deserves resources so that they can learn about new opportunities unraveling in the community and feel a sense of empowerment.
