HAE doesn’t have to limit your opportunities. Hear how Nathan, a young individual with HAE and former HAEA Social Media Intern, pursued his dreams of attending college and traveling abroad after learning to embrace his diagnosis, manage his symptoms, and advocate for himself.
I started having hereditary angioedema (HAE) attacks at a young age and was diagnosed when I was only seven years old. We have a long family history with HAE going back at least to my great grandmother, so we knew what it was even before I was officially diagnosed.
When I was younger, in elementary school, I didn’t realize my HAE was unique. I knew other kids missed school sometimes because they were “sick,” so I figured everyone went through these attacks. As I got older, and entered middle school and high school, I became more ashamed of my diagnosis and HAE attacks. I hesitated to talk about my HAE because I was afraid of what the other kids would think. I was in a world where everyone was trying their best to fit in, but I had this thing, HAE, that made me stick out. I kept my attacks and disorder a secret as long as I could, but as my attacks became more frequent, it became harder to hide.
Even though I was struggling with how to share my diagnosis with others, I didn’t let my HAE hold me back. Growing up, travel soccer was a huge part of my life and HAE wasn’t going to keep me from playing. Occasionally I had to miss practices or games, and I always had to remember to bring medication with me to tournaments and games. But even with those challenges, I’m very glad that sports were a part of my life growing up. Obviously, with HAE we need to be smart about it, but I would definitely tell people to not let HAE stop you from playing the sports that you love.
It was my junior year of high school, a pivotal time, that I joined the Hereditary Angioedema Association (HAEA) and started meeting other young people with HAE. Slowly but surely, I started becoming more comfortable with my diagnosis. I started telling my close friends about HAE, and then I started telling my not so close friends about it as well. Currently I’m at a point where I am very comfortable with my diagnosis and will talk about HAE with just about anybody.
I am currently a junior at Virginia Tech majoring in finance with a minor in German. College presented a new set of challenges related to my HAE. I have roommates. I wanted to travel abroad. I had to learn to be open and honest about my diagnosis, so my HAE wouldn’t stop me from having new experiences. With my attacks under control, thanks to preventative medicines, I was able to spend the summer after my freshman year in Germany working at a vineyard.
More recently, I spent the spring semester of my sophomore year traveling abroad in Switzerland. These were both incredible experiences. I got to visit 13 different countries and experience many different cultures. Preparing for travel definitely took a little bit of work, with having to secure plenty of medication for each trip, which wasn’t always easy, but in the end, it was worth it. When I was younger, and still having several HAE attacks a month, I would have never dreamed I could study abroad in college, but I was determined not to let my HAE limit me. My biggest advice for those with HAE who want to travel is to just do it! As long as you are smart about getting your medicine and staying on top of your doses it is so doable.
My journey as a young person with HAE has taught me that people aren’t judging you nearly as much as you think they are. For me this is about my HAE diagnosis, but it could honestly be applicable to so many other things. I was afraid that people would look at me differently if they knew I had a disorder, but since becoming more open about it, I have found just the opposite to be true. Once I embraced my diagnosis, others did too and a whole world of opportunity opened up for me.
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