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We Asked People What It's Like to Live With Deadly Food Allergies

And don't get them started on the price of an EpiPen.

by Sheherzad Preisler
May 9 2017, 4:00pm

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There are lots of reasons why it sucks to be cursed with a food allergy: Can you imagine never being able to even try a Reese's cup? Or dig into a jar of Nutella? Or slurp a hard-earned milkshake after finishing a half-marathon?

Serious food allergies can be deadly, and they currently affect about 15 million Americans—including one in every 13 children, a number that is climbing. Between 1997 and 2011, instances of food allergies in children increased by about 50 percent, according to Food Allergy Research and Education. Worse, EpiPens—life-saving shots of adrenaline that people with severe allergies are encouraged to carry at all times—can cost as much as $600. We talked to people with severe food allergies about those and other challenges they face every day.

Sewa, 24, Los Angeles, CA

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Allergies: All nuts except for pecans and almonds. Also, "random stuff—like, once in middle school, this kid was hiding a latex balloon in his backpack and I came in and couldn't breathe."

How many times have you used your EpiPen?
A conservative estimate would be about 20 times, maybe 25. It sucks because they're usually around $700. I once told a nurse how many times I'd used them and she told me I have to be way more careful, because they can be less effective over time if you use them too much.

Could you give me an example?
The worst scenario I've had was at Just Salad for lunch; I had the same meal for the millionth time. My throat was feeling weird, but I dismissed it. Then six hours later, I couldn't breathe. My inhaler didn't help, and I didn't have my EpiPen. I had to call an ambulance. It's dangerous because you don't know how well they clean stuff, and I usually don't know what exactly gave me a reaction.

Do you feel like you're missing out on anything?
It's a hindrance to my life, but it's also whatever because I don't really know what I'm missing. You either die or you live—that's it. I eat a rotation of eight or nine meals because I know they're safe.

Vikram, 23, Oxford, UK

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Allergies: All dairy products as well as certain tree nuts. "My allergies are severe; I have anaphylaxis and carry an EpiPen around. I've used it four or five times before."

What was it like growing up with your allergies?
As a child, they were annoying. I felt excluded to some extent at birthday parties because I could never have pizza or cake. I also rarely ate out in high school when my friends went out for meals—I didn't want to accidentally have something I was allergic to. Over time, though, I became indifferent to missing out out on milk products, though I still would love to have ice cream and pizza at some point.

Do you think you're cautious enough?
I think I generally handle my allergy quite well. I always have to be careful and read ingredients of food products as well as ask about allergens at restaurants. I often get self-conscious about doing this, though: I never like being defined by my allergies.

Ralina, 32, Los Angeles, California

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Allergies: All seafood except for clams.

When's the last time you had to use your EpiPen?
I was ten and my aunt and uncle were serving salmon. My sister's allergic to seafood, too, and I had this gut feeling that I shouldn't eat it. My aunt said I was just being stubborn, so I ate it, and immediately reacted. They assumed it was mercury poisoning and called poison control, but they said it was an allergic reaction so I was rushed to the hospital. At the time, EMT laws didn't permit them to use an Epi on me, so I got it at the hospital.

What happened there?
My face was unrecognizable. My mom took me to the bathroom and made me look at myself, so I would understand how serious my allergy was and be careful. I've been paranoid since then, and for at least a solid three days I didn't eat.

How have you adapted?
I'm very firm when eating at restaurants and telling waiters about my allergies. And my boyfriend loves seafood, so he only gets to eat it when he's on business trips. He then has a 24 hour ritual where he showers and brushes his teeth a lot so I'm safe. And the EpiPen prices are absolutely ludicrous.

Caroline, 22, Manhattan, NY

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Allergies: Tree nuts—"that's all nuts except for peanuts. I carry two EpiPens, because my allergist told me just in case one malfunctions or something goes wrong."

Tell me about a time you had a reaction.
Once, in college, I'd ordered Indian food online with a friend. In the notes section, we wrote "LIFE-THREATENING NUT ALLERGY" in all caps. I took one bite of the curry and I immediately knew something was wrong. So my friend called, and it turns out the dish was loaded with nuts. My friend stabbed me with an EpiPen and someone from public safety drove me because ambulances are very expensive. The experience taught me that you have to order food on the phone when you've got a life-threatening allergy.

Mason, 27, Brooklyn, NY

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Allergies: Red meat.

How did you find out you were allergic to red meat?
For a few years I'd occasionally get hives, have stomach pain, and sometimes even breathing problems, but I could never pinpoint why. About a year and a half ago, I went to a barbecue. That night, I couldn't sleep and my hands got really swollen. Even two benadryl didn't help much. So I finally saw an allergist, and it turned out that, thanks to a tick bite, I had developed an allergy to alpha-gal, a carb found in red meat. It's like the inverse of Spiderman: Something bit me and gave me the opposite of super powers.

Why was it so difficult to figure out what you're allergic to?
Reactions to alpha-gal happen six to eight hours after you eat it, and I'd always be trying to think of my most recent meal. I also didn't even consider that having allergies to red meat was a possibility.

What do you most wish you could have?
Sometimes I'll crave a burger, but I can at least eat turkey and chicken. It's funny, I was at a bodega ordering a sandwich and somehow the guy next to me and I were talking about my allergy. He was like, "Oh but you fuck with fowl, right?" And I was like, "Yeah, I fuck with fowl!"

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