Have you ever wondered what life might be like if certain foods were unsafe for you to eat? For people who have serious food allergies, this is an everyday reality. Meet Susan T. She's a high school student living with a severe peanut allergy. She has had to give herself shots of epinephrine, a medicine that treats life-threatening allergic reactions. Giving yourself a shot isn't easy, so Susan wants to educate others about living and staying safe with serious allergies. Read Susan's interview to learn about her experience living with life-threatening allergies and how she's spreading the word to help others prepare for reactions.
How old are you?
I am 15 years old and just finished my sophomore year of high school.
Will you tell us what it's like to live with life-threatening food allergies?
For me, life with food allergies has been very restricting. At one time, I was allergic to peanuts, soy, hemp, and all tree nuts but almonds. I was so sensitive to peanuts that even a tiny amount could trigger a life-threatening reaction. I've had reactions to peanuts without eating them, so my parents and I were always on high alert. I rarely ate out (my parents found a few "safe" restaurants in our area), and I only went to a few friends' houses. I could not sit where I wanted at lunch and never ate food at parties.
When did you learn you had these allergies?
My parents thought I might have had food allergies when I was little. I often choked or gagged on new foods and restaurant foods, which made my mother think I had some kind of allergy. My doctor thought I had a weak gag reflex, so he was not worried. He told my mother to give me a tiny amount of peanut butter on a piece of toast. I gagged on it, spit it out, and started crying.
Just before my third birthday, I started seeing a new doctor (for an unrelated issue). When my mother explained that she thought I was allergic to peanuts, my new doctor ordered blood tests. He called my mother later that day to tell her I had one of the most severe peanut allergies he had ever seen. He ordered epinephrine auto-injectors, which are shots with medicine that treat severe allergic reactions. He also sent us to a doctor who specialized in treating children with allergies.
What does it feel like when you're having an allergic reaction?
Allergic reactions aren't always the same. Typically, I get red in the face, develop hives (red, itchy bumps on my skin), and have difficulty breathing. That said, I have had a reaction where my entire body (even the palms of my hands!) was covered in hives, but I had no trouble breathing. Sometimes I have an overwhelming feeling that something bad is about to happen. I used to get a little scared and anxious during allergic reactions, but now I know I can handle them and give myself my epinephrine quickly.
What's the most challenging part of living with serious allergies?
Sometimes it's hard knowing I have to avoid some foods (like pizza) because I don't know enough about their ingredients. This was especially difficult for me when I was younger, because it meant bringing my own food to birthday parties and other places where we knew the food wouldn't be safe for me to eat. Since I'm a bit shy, having my own food at social events where everyone else was eating the same thing made me feel awkward. I hated feeling different. As I've gotten older, I've come to accept this part of my life, although it's never easy.
It's also hard to help people understand how serious food allergies are for me. For years, people struggled to understand that I couldn't even be in the same room as peanuts. I could have an allergic reaction if I accidently came into contact with peanuts or there were peanut particles in the air. This actually happened to me on an airplane when I was about 4 years old. The plane had to make an emergency landing because I was having a reaction. So scary!
When did you decide you wanted to raise awareness about food allergies and epinephrine, and why is it important to you?
When I was 11 years old, I worked with a doctor to see if we could lessen my sensitivity to peanuts. I had a hard time tolerating the peanuts, but it taught me some important skills. I learned to recognize the signs and symptoms of allergic reactions. I also developed a lot of confidence in my ability to use my epinephrine auto-injector. It can be scary to give yourself a shot, but it's a really important skill for people with serious allergies. I wanted to make sure other people knew how to protect themselves, so I decided to record an educational video.
Will you tell us more about the videos you've created?
I made my first video, "How to Stay Alive," when I was 12. The video shows me giving myself a shot of epinephrine during a real anaphylactic reaction and talking about the signs and symptoms of anaphylaxis. The video also includes interviews with three nationally recognized allergists who work with adolescents, and they provide feedback on what I did and how I did it. (I didn't do it perfectly.) I have revised and re-released "How to Stay Alive" several times. My second video is called "This Is What I Know," and it focuses on the fact that no one plans to have an anaphylactic reaction.
My videos, which earned me a Girl Scout Silver and Gold Award, spread the important message of "epinephrine readiness." This is a term I created that means understanding the signs and symptoms of anaphylaxis, knowing how and when to give yourself epinephrine, and remembering to always, always carry two epinephrine auto-injectors with you.
How else do you spread the word about food allergies, and what kinds of responses do you get?
I primarily spread the word through my videos and epinephrine readiness training sessions. During these sessions, I share my videos, hold a discussion about anaphylaxis and how epinephrine works, and then provide students with an opportunity to practice injecting a real (but expired) epinephrine shot into an orange.
What do you want girls to know about food allergies?
Living with food allergies might seem very difficult, but if everyone works together to build a safe and supportive community, it is totally doable. People who have food allergies are just like everyone else, so it is important to treat them that way and to make sure they are always included (even if it means excluding food from events or gatherings).
What is one thing you want girls with severe food allergies to know?
While food allergies are an important part of you, they don't define you. Don't let your food allergies keep you from following your dreams! If you want to study abroad, travel around the world for sports, or work in the food industry, it IS possible. You'll just have to educate many people along the way.
Content last reviewed Friday, August 3, 2018
Page last updated August 3, 2018