“It takes courage to grow up and become who you truly are.” - E.E. Cummings
Dreaming is powerful, especially if you have any relation to Hereditary Angioedema (HAE). After two years of misdiagnosis, I was the first in my family to be diagnosed with HAE with Normal C1-Inhibitor at the age of thirteen. My HAE journey has been long and at times complicated, but that’s not the point of my story. Instead, I want to tell you how a dream can change your life when you have a relation to HAE.
I remember when I was little, how many adults in my life would ask me, “What do you want to be when you grow up, Karissa?”. As a blonde little girl, I loved the movie Legally Blonde and would sometimes respond with, “a lawyer.” Other times, I’d be focused on how much I loved singing in the car, the shower, or anywhere quite frankly, and I would respond with “a rockstar.” Other times I would respond with “a doctor or a forensic scientist” because nothing seemed to phase me as a child. I loved the medical and crime shows my parents would watch at night. At this point, you’re probably getting the gist… I had no clue what I wanted to be when I grew up as a child. I simply wanted to be an expert in everything.
Now we can flash forward to my life as a preteen. With my HAE diagnosis came a lot of questions. Would I be able to be a lawyer because of the immense stress of law school and how that could impact my HAE? Would I be able to be a doctor or a scientist with the way my hands swelled and how unpredictable my disease could be? Would I be able to one day fulfill my lifelong dream of becoming a mom? These questions, along with the constant swells I faced, began to weigh down on my dreamer outlook on life. While I wanted to be everything, I soon became discouraged to become anything.
Despite my worries, I continued to press ahead in school. I excelled in my academics and decided to graduate high school a year early to begin attending college. I was accepted into many schools and truly had no idea what I wanted to do with my life. After deciding to major in both political science and mechanical engineering, I decided to attend North Carolina State University. Unfortunately, within two months of attending, I was in a bad car accident that triggered nearly a month long of back-to-back HAE attacks. With almost a month of hospitalizations at Duke University in the pediatric intensive care unit (PICU) under my belt, my physicians, parents, and advisors agreed that I would not be able to make up the time I had missed in college. It was best at that time that I medically withdrew from college.
As a child, I pictured myself as many things. A college dropout happened to never have been one of them. I felt defeated. It wasn’t until I began taking care of myself mentally through therapy and intentional self-care that I realized my dreams were not out of reach. I decided to apply to college again after a year of healing my mind and body and was accepted to the University of North Carolina at Charlotte.
Before beginning at the new school, I reflected on my time at NC State. I realized I wasn’t very interested in political science but did enjoy my calculus classes. I began taking classes at Charlotte in fall of 2017 as a mechanical engineering major. Throughout my entire five years (yes five… my HAE still reared its ugly head from time to time) at Charlotte, I changed my major six times. While I could never decide exactly what I wanted to be when I “grew up,” I did find great joy in participating in extracurricular activities on campus such as the University Honors Program, College Mentors for Kids, research labs and conferences, and much more.
With each organization I participated in or volunteered with, I gained a passion for the work I was doing and a desire to gain leadership within those organizations. As I navigated college with HAE and still had fairly frequent attacks, I found myself in a position where I had the opportunity to advocate for HAE. I have found that the best way for me to advocate for HAE is to share my experiences. I needed to be transparent with others about what I am either going through or have been through.
Knowledge is power and I chose to empower the HAE community by sharing my knowledge of the disease. Soon, sharing my HAE journey became more than just telling a friend, peer, or a professor about my disease; it became something that truly excited me and the topic of many of my school projects, including my honors thesis. With time, I began to realize that no matter what I became when I “grew up,” I would always want to be an advocate for HAE.
After graduating from Charlotte last May 2022, I work for the Hereditary Angioedema Association (HAEA) as a Research and Advocacy Specialist. Never in my wildest dreams would I have pictured myself as a child where I am now. I get to live my life every day not only advocating for myself, but helping others who also live with this rare disease. So no matter what you think you want to be when you “grow up,” I encourage everyone to dream despite your HAE. Do that project, try that new thing, or make a new friend! You never know where your experiences will land you or the new passions they might spark. Let me be your example, and don’t let HAE be the thing that sparks out your flame. Dream despite HAE!
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