Our Community On Campus
Our Community On Campus
Written by Shanthi Hegde.
Posted: December 13, 2024. This article was originally shared in our Winter 2024 Newsletter.
I grew up in Georgia, and I have lived with bleeding issues for as long as I can remember. However, it wasn’t until I was 19, between my first and second years of college, that I was diagnosed with Von Willebrand Disease (VWD), after experiencing eight months of continuous bleeding. My journey didn’t stop there; after several more bleeding episodes, I began getting tested and was diagnosed with Factor VII deficiency earlier this summer.
When I was first diagnosed, I didn’t know much about bleeding disorders, and I was the only person in my family to receive this diagnosis. It was a confusing and isolating time. While it was a relief to finally have a diagnosis, I struggled to find others my age who could relate and offer guidance—particularly when it came to balancing school, medical appointments, and managing a chronic condition. I was lucky to have amazing supportive friends, but at the same time, I also wanted to find a community of others around me who also had bleeding disorders.
In 2023, I joined the National Bleeding Disorders Foundation’s National Youth Leadership Institute (NYLI). I wanted to connect with other young adults with bleeding disorders from around the country, and each of their personal stories inspired me deeply. Their passion for improving the bleeding disorder community motivated me to work toward positive change and a cure for all bleeding disorders.
After my NYLI experience, I wanted to make the information I learned accessible to other young adults locally. So, a few of my friends at Northeastern University and I, drafted a proposal to create the Husky Hemophilia Group (HHG)—the first young adult bleeding disorders group in the nation. Earlier this year, Northeastern approved our request and made our group an official student group on campus, and they even provided us with some funding to help us get started.
Our group attracts a diverse range of students, from those with bleeding disorders who are students on campus, to those who simply want to learn more about bleeding disorders or are considering working in the medical field in the future. We host a mix of fun bonding activities and educational events featuring guest speakers, like Kate Bazinsky, from the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), and Dawn Rotellini, from the National Bleeding Disorders Foundation (NBDF). Some of our social events have included: our version of NEHA’s Best Bloody Mary competition, which we call “bloody mary mocktail” event, a bleeding disorders trivia night, and a viewing of a “Grey’s Anatomy” episode featuring a bleeding disorder during finals week.
This Spring, we also came together to advocate on behalf of the bleeding disorders community by visiting our Senators’ and Representatives’ offices and asking her to support increased access to mental health services, copay accumulator adjuster legislation and step therapy reform.
We are also coming together to raise awareness about bleeding disorders and provide facts to everyone on our campus. After a professor made a comment along the lines of “women can’t really have hemophilia,” I spoke with them, and got permission to have the Husky Hemophilia Group give a presentation every semester to their 220-person genetics class about bleeding disorders, the genetic research surrounding women with bleeding disorders, and why it’s crucial to study them.
Educating future healthcare professionals is important because they are the next generation of doctors, hematologists, and advocates. Whether they choose to support research, raise awareness, or advocate on a federal level, this kind of education makes a difference in how bleeding disorders are understood and addressed in the future. As for my future, I plan to work in patient advocacy, pursue a Master of Public Health, and eventually attend medical school.
Shanthi is a senior at Northeastern University in Boston, MA, where she is studying Psychology and Biology.