Article by Susan Tatelli
Cover illustration by Carmen Szeto
I have a life-threatening food allergy to peanuts (and pistachios, hazelnuts and soy), and recently completed a difficult clinical trial in an attempt to develop tolerance to peanut.
Anaphylaxis is a systemic allergic reaction.
Anaphylaxis is scary and terrible.
Anaphylaxis is: hives, flushing skin, feeling hot, swelling of lips/tongue/throat, nausea, vomiting, wheezing, coughing, a feeling of doom, loss of consciousness…death. Imagine not being able to breathe and not knowing for certain your medication will help -- that’s anaphylaxis.
In the past 2½ years, I have had ten anaphylactic reactions requiring epinephrine.
I self-administered epinephrine for the first time when I was eleven. I remember my mother sitting on my bed, encouraging me. We had talked about my self-administering my epinephrine if I needed it, and I knew that was the plan. I wanted to be able to do it, but I felt scared—shaky, anxious, uncertain. I held my breath, squeezed my eyes shut and self-injected. The EpiPen kicked back out of my thigh with little if any medicine delivered. Blood dripped down my leg, as I tried frantically to shove the needle back in. My mother took my hand, stopped me, and handed me another EpiPen, telling me I needed to try again. I was SO READY the second time; there was no blood when I did it right!
My experiences in the clinical trial taught me about the severity of my food allergies, anaphylaxis, and epinephrine readiness. I have learned: Epinephrine Readiness Saves Lives. Sometimes it’s hard to see the good in something bad when it’s happening, but before the clinical trial was over I realized my story was powerful. So powerful, I think, that it might even save lives.
No one plans to have an anaphylactic reaction. According to foodallergy.org, food allergic teens are at the highest risk of dying from an anaphylactic reaction. I am a food allergic teen. I am working to spread the important truth – that Epinephrine Readiness Saves Lives.
For my Girl Scout Silver Award, I created a video called How to Stay Alive, about anaphylaxis and epinephrine, using footage of me self-administering my epinephrine. I interviewed my doctors and others for my video about signs and symptoms, and when to take action. One of the allergists demonstrated proper administration of an EpiPen. I uploaded my video to YouTube to educate people how Epinephrine Readiness Saves Lives. I believe sharing my experience makes anaphylaxis and giving yourself or someone else an EpiPen less frightening.
My original goal was to have 5000 views and teach fifty people in person. Within the first 24 hours, How to Stay Alive, had more than 7000 views and had been re-shared over 180 times. I just updated and reposted it because the FDA changed its epinephrine guidelines (so there are now multiple versions on YouTube). As of last month, there are nearly 40,000 total views and the video has been shared more than 350 times.
In addition to the video, I conducted training sessions for more than ten Scout troops, school administrators, and others. I’m getting regular requests! Many people I taught have trained others in a ripple effect that makes it impossible to truly calculate the impact of my project.
All this together led to three media interviews – newspaper and television. I was also honored to speak at a national food allergy conference in May and again in November, and am hoping to speak at one in April of this year, too.
I am shy, and did not like calling attention to myself. I really did not like talking to large groups. As a result of my project, I have become more comfortable doing both of those things. I’m more confident, and found my voice because I am passionate about food allergy education, awareness and advocacy. Some people have found the poetry slam I did about my clinical trial experience really helpful. You can watch it here.
I am so moved by the response to my project. People e-mailed, messaged and even sent me real thank-you notes:
-- The best explanation I have seen.
-- Watch this if you know ANYONE with a food allergy (you do).
-- It is people like you, who with courage and generosity of spirit are willing to share your experience and expand the consciousness of so many others.
My favorite part of the project has been hearing how my experience helps others. Many parents tell me that my video gave them the courage to act promptly, when before they might have hesitated in using epinephrine. I have also heard from many children and teens that my video helps them. One girl wrote that she watched the video every night for weeks, until she knew it by heart, so that if she ever needed epinephrine, she would know what to do. Over the weekend, I heard from a mother whose son used to cry when practicing with the EpiPen trainer. She used to think he was frustrated, but after he watched my video, he told her that he had been worried he would fail and die. He told his mother that seeing me hesitate and have to try a second time made him confident that he could self-administer if he ever needed to.
I am thankful for my experience in the clinical trial. Without TEN anaphylactic reactions, I never could have planned to video one. Without that footage, I never could have made How To Stay Alive. Without that video, I never would have been able to help people the way I have.
I am hoping to take my project to the next level with This Is What I Know, a video I am developing for my Girl Scout Gold Award.
I have learned that a single person -- even a teenager -- can make a difference.