By ALI JAFFE
August 30, 2016
I used my first EpiPen at the age of 7, after eating chocolate cake at a restaurant, sliced with the same knife used on a walnut cake.
Five years later at sleep-away camp in New Hampshire, it was the marshmallow fluff, contaminated by peanut butter. The nurse was so nervous she stabbed herself (EpiPen No. 2) instead of me.
I’m 24 now. All told, I have had to use an EpiPen 12 times in the past 17 years for life-threatening allergic reactions to nuts.
EpiPens have been in the news lately as patients protest skyrocketing prices. The reality is, we are spending money on a product we hope never to use, but sometimes, we don’t have a choice.
I’m vigilant about checking food labels and asking about ingredients at restaurants, but as anyone with food allergies will tell you, life happens. Servers don’t always know they can’t use the same knife for different foods.. The waiter doesn’t know he should double-check to make sure the chef didn’t change the recipe and add peanuts that evening. And many people don’t seem to realize that these small lapses can mean life or death to a person with food allergies.
And that’s why people with food allergies (and their parents) are so passionate about the EpiPen.
When I was growing up, EpiPens were scattered around my house and tucked into car seats and Mom’s purse like crayons. I’m the oldest of four kids and all of us had life-threatening allergies to a grocery list of foods including peanuts, dairy, eggs and shellfish. From the time I was 5 years old and for many years after, I carried my own set of EpiPens in a hunter green fanny pack, which was cool because it was the ‘90s.
There wasn’t a lot of awareness about food allergies back then. I sat alone at the “peanut-free” table in the cafeteria at my public elementary school and was forever explaining to my friends’ parents that if you dipped the same knife into the peanut butter and the jelly, I could no longer eat the jelly either. When I was 12, I spoke at a news conference in front of Capitol Hill to advocate for a food-labeling bill.
As for my EpiPen, well, no one – teachers, friends, airport security – knew what it was or how it worked. Without an injection of epinephrine to treat a severe allergic reaction, people die. It’s almost certain that I would have died if I hadn’t had my EpiPen within arm’s reach for each of my 12 reactions.
During my second week at a new high school, at the age of 15, I ate nut-free pasta in the cafeteria, except that it wasn’t. (EpiPen No. 3.) A year later during a family vacation in Beijing, my parents used cards printed in Mandarin to communicate with waiters about my nut allergy. Something got lost in translation, and I ordered a chicken dish that contained hidden crushed peanuts (EpiPen No. 4).
I’ve carried an EpiPen every day for two decades. An EpiPen is bulky, too big to slip into a jeans pocket. I know my EpiPen is a lifesaver, but I am often jealous of the freedom others have, to go for a night out dancing with friends, unencumbered by a bag of EpiPens.
People who use EpiPens wish we had more choices. EpiPens can’t be left in a hot car. The instructions are in a tiny font, and it’s not uncommon, during a stressful allergic reaction, for people to misuse the injector (just ask my summer camp nurse). It expires every 12 to 18 months, necessitating a costly renewal again and again.
In 2009, at the age of 17, I was on an airplane flying back from Santiago, Chile, and asked the flight attendant, in English and Spanish, whether a dish had nuts in it. He said, “It’s cheese ravioli. There are no nuts.” I never eat on airplanes, but it was such a long flight. I was hungry. It was cheese ravioli. What could go wrong? It had walnuts in it. Time for EpiPen No. 5. I also was treated with prednisone to avoid an emergency landing in Peru.
On the day of my high school graduation, my family celebrated with lunch and a nut-free graduation cake, made especially for me by the restaurant, where the staff members all knew me and my allergy. Someone scooped hazelnut ice cream, instead of vanilla, by accident. Thank goodness for EpiPen No. 6.
A year later, it happened again while I was having dinner with my mom and a friend. I can’t remember the food, but my best friend and I dashed to the restaurant’s bathroom together, and she watched as I stabbed myself in the thigh with EpiPen No. 7.
Every one of my reactions has been anaphylactic, which means they were life-threatening. For almost all of them I went to the hospital. The epinephrine from the EpiPen only lasts about 15 minutes after use, so in most cases, additional treatment is necessary.
A few days before my college graduation, I bragged that I had made it through college without an allergic reaction. Then at a friend’s graduation dinner, I ate a dip (EpiPen No. 8) from a plate of food I was assured was nut-free. (It contained pistachios.)
The next year, I attended a friend’s Mediterranean picnic birthday dinner in Brooklyn. The restaurant had assured her the food was nut-free. I called the restaurant myself to confirm.. Then I bit into grape leaves I thought were stuffed with rice, but they were stuffed with pine nuts (EpiPen No. 9) instead.
My last two episodes (EpiPens No. 10 and No. 11) happened after picking up lunch from spots near the Ed Sullivan Theater in New York, where I work. I was vigilant about making sure both meals were free of nuts, but I had severe reactions anyway. Both times I was rushed from work in an ambulance. The last time was my worst reaction to date – I had a relapse a few hours later and had to use EpiPen No. 12.
I tell these stories not as a victim, but to show what a profound impact the EpiPen has had, allowing me to live my life. I have never felt that having these allergies inhibits me. If anything good has come out of the recent pricing controversy, it’s that this portable lifesaving injection called the EpiPen has become a household name. Now people who don’t have food allergies know how Indispensable it is for those who need it.