Empathy and awareness: Unveiling the hidden dangers of food allergies [PODCAST]

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Join us for an insightful podcast episode as we discuss the critical issue of food allergies and the recent incidents of food-induced anaphylaxis deaths that have deeply impacted the food allergy community. Our guest, Lianne Mandelbaum, is the founder of the No Nut Traveler, an organization dedicated to raising awareness and advocating for individuals with food allergies during travel. We delve into the real-life consequences of small mistakes and oversights related to food allergies, the emotional impact on families, and the need for greater understanding and accommodation in schools, workplaces, and public spaces. Lianne shares her firsthand experiences and sheds light on the challenges faced by those with food allergies. Don’t miss this compelling conversation as we strive to promote empathy, awareness, and safety for individuals with food allergies.

Lianne Mandelbaum is founder, the No Nut Traveler, and can be reached on Twitter @nonuttraveler.

She shares her story and discusses her KevinMD article, “Food allergy tragedies: the reality that haunts us.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Lianne Mandelbaum. She is founder of the No Nut Traveler. Her KevinMD article is titled “Food allergy tragedies: the reality that haunts us.” Lianne, welcome back to the show.

Lianne Mandelbaum: Thank you so much for having me on again.

Kevin Pho: So Lianne has been on multiple times. Go to KevinMD.com/podcast. In the upper right-hand corner is a search icon; click on it, and you can look back at Lianne’s prior episodes and hear her story. Now, today I want to go straight into her most recent article, “Food allergy tragedies: the reality that haunts us.” Tell us, how did your article come together?

Lianne Mandelbaum: Unfortunately, it came together because there were a whole bunch of food allergy anaphylaxis tragedies that ended in a fatality. Unfortunately, they were all younger people in the prime of their lives, just doing normal activities that young people tend to do, and they were struck down by a bite of the wrong food, cross-contamination, making a mistake.

And it really struck me, because many times very well-intentioned journalists, doctors, and other people, when you are afraid for your child or for yourself, will tell you that the statistics are very low on these food anaphylaxis deaths. And thank God they are; that is correct. But while the deaths are rare, the mistakes that lead to the deaths are really, really ordinary, and I think that’s what a lot of people are missing. It’s not as if this was some sort of outlandish mistake that your child could never make, or that your child hasn’t even made in the past, or you haven’t made as a parent.

So I really wanted to get that across, because oftentimes we’re looked at as fearmongers because the stats are low, but that’s really not the whole picture. So that’s really why I sat down. As always, I try to reach an audience to create a little more understanding and empathy. So that was really my goal here, and I think I hit it.

Kevin Pho: So give us some context on the cases that you mentioned in the article. When you say that these are just everyday things that led to these tragic outcomes, paint a picture of what exactly happened.

Lianne Mandelbaum: So for those who weren’t familiar with those cases, you had a teen in California, for example, who was going to a school dance, and she allegedly left her auto-injector on the party bus, so it wasn’t with her. And she had taken a bite of a cookie, I believe, that was said to be safe, which turned out not to be safe. And the bus had left, and then her reaction continued, and the reports that came out were saying that the kids were doing CPR on her in the parking lot as she died, and her auto-injector was nowhere near her.

And the thing is, I have a diligent child. He’s a teen, but he’s diligent. I am a diligent parent. I am aware of the mistakes that happen, and I have lost count of the number of times that I have had to drive back to where he’s done his tennis lesson or where he’s participated in a tournament because he has left his auto-injector behind. Human beings are not perfect, yet for food allergy people, if you fall below the mark of perfection even once, it can result in a deadly consequence. And everybody makes mistakes.

So I think going to a high school dance, every celebration in life, whether it be a birth or a funeral, involves food. We’ve got food all around us, and expecting everybody to be perfect is just so upsetting to me. People are like, “Well, it’s the person’s fault. She left it on the bus, or she took a bite of a cookie, or she opened up a package that looked like the safe package, and it was the same color, but she should have read the ingredients.” Well, it’s really nice to be on that other end and say that you would always be perfect.

I’ll give you a great example. I was away a couple of years ago, and I had forgotten to buy some groceries, so I decided to do an online shop. My husband called me the next day, and he said, “Are you trying to kill Josh on my watch?” And I’m like, “No.” I had clicked the wrong brand of ice cream cones, and it wasn’t a “may contain,” it wasn’t “made in a facility.” The ice cream cones that came were studded with peanuts. I mean, if he had taken a bite of that. We are all fallible, and we all make mistakes, and we’re all human.

So I think that a little more awareness and understanding. And also, we’ve talked about this before in my previous articles, and people can go back. We need auto-injectors in public spaces, just like we have defibrillators. It’s not even just for the girl who takes the wrong bite; it’s for the person who doesn’t know that they have an allergy. Stock epinephrine in schools has been used mostly on people who don’t know they have an allergy. We don’t want someone’s first bite of food where they have an allergic reaction to be a fatal reaction. So there are lots of reasons for education.

The other thing is, kids are embarrassed, but it’s not just kids, and we’ve explored this a lot on your podcast as well. People are made fun of when they bring up their legitimate, life-threatening allergies. This takes place in schools, and it takes place in the air, and of course I have a special interest in the air because I collect testimonials from families, and it’s just very upsetting.

And we actually have data to back it up now, out of Ruchi Gupta’s group at Northwestern. I’m the second author on this study that shows that, yes, people are hiding. Over 30 percent of people are hiding their food allergy from the crew because they are afraid of repercussions or being made fun of, and a third is pretty high. We had a pretty robust response, almost 5,000 respondents. And that’s all leading back to the fact that people don’t believe food allergies are real. People think that you’re being a Karen or a helicopter parent for checking ingredients constantly, but this is why we do it. We don’t get a do-over.

Kevin Pho: You mentioned earlier that when the media reports on these tragic stories, they often emphasize how rare that is. How does that impact your response? Why is that important?

Lianne Mandelbaum: It’s an issue because people are like, “Well, again, these hysterical parents,” or the hysterical adult with the food allergy. In fact, I feel worse for the adult, because they very well may be extremely afraid, but they don’t look like a cute kid anymore, so they’re even less likely to encounter sympathy, both on the ground and in the air.

And so when you make it seem like this never happens, and again, it’s great that the stats are low, it would be great if such reports actually gave context, like talking about the mistake that led to it, and that that itself is something any adult or diligent food allergy teen or child can make. I think that would really help.

I also think, when we’re talking about physicians, it would really help. OK, tell me the deaths are rare. I’m not saying you shouldn’t tell me that, but it’s a little dismissive when you say it’s comparable to a lightning strike or a car accident, because I’m not encountering lightning all day, every day, but I am encountering food all day, every day, and every time that happens, I have the potential to make what could be a fatal error.

So instead of dismissing my fears and saying this could never happen to you, when you could see any of these situations happening to your child, give me tools. Say, “This is what you can do to lessen the statistical reality that this could happen.” Always carry your auto-injector. Make sure you have it on you. If it’s not on you, if it’s in your car, if it’s on the tennis court, wherever it is. I try to drill it. I just hope one day that if he thinks about leaving it behind, he’s going to hear my annoying voice.

Fight for stock epinephrine in schools and on planes. Nobody sticks up; we don’t have a requirement for auto-injectors on planes. It was just a physician a few weeks ago on Southwest who said she saw her life fading in front of her because there were only vials, and at first they couldn’t find a doctor on the plane. This is unacceptable. We’re living in 2023. We have the right tools. We have defibrillators on every plane. How are all the physicians globally not arguing to have the right tools in emergency medical kits? They’re accessible, they’re affordable, and there’s absolutely no excuse.

So I think it’s about getting people to care about these issues and realizing that you can’t just dismiss it as being rare. There are actions we can take. We can empower patients, we can absolutely fly safely, and we can be safer on the ground. But we do need support. We really do.

Kevin Pho: When these tragic stories come to light, you mentioned that some of the responses often blame the victim. Talk more about that, and where are you reading that?

Lianne Mandelbaum: Well, it’s often in comments, and it comes from within the food allergy world and outside the food allergy world. When it comes from within the food allergy world, and I’ve thought about this a lot, this is just my opinion, but I think it’s because you can’t face that this could happen to your child. So you say, “I’ve taught my child to read. My child would never make that mistake,” or “I vet everything,” or “I ban that food from my house, so that kind of accident wouldn’t happen.” And it’s all very good and well until the mistake happens, because a mistake can happen to anybody.

Outside that world, people just don’t understand how easy it is to make the mistakes. There was a girl in Florida who died from taking a bite of the wrong chocolate chip cookie. The package was exactly the same, and she was at a friend’s house, and it was peeled back, so she didn’t see it was the peanut butter one. All she saw was the red surrounding. She saw the brand, the parent offered it to her, and tragedy ensued.

So again, it’s just a cop-out when you blame the victim. This person is a victim. Nobody chooses to have a food allergy. Nobody chooses to make a fatal mistake. And again, we’re all fallible. To err is human, right? That’s a famous quote. I mean, we are all human. I don’t think there’s anyone among us who hasn’t made a mistake in everyday life, and this is 24/7, every day, with no vacations from food allergies. So have a little compassion. And if the families come forward and they’re sharing their story to avoid another tragedy, don’t attack them. I mean, they’ve just buried a child or an adult, and they’re trying to not have this happen to somebody else. The hostility is so alarming.

But I do want to go back one more time and say that you have mainstream media outlets like Saturday Night Live. I wrote a piece for KevinMD; that was our last discussion. With no apology, the skit made fun of the kid with the lip blowing up, and everybody’s laughing. I mean, when you start laughing at allergic reactions, then you’re not necessarily going to take them seriously when someone alerts you to them, because you think they’re funny. And it leads into the stigma that food allergy is not a real disease, and then it creates this uphill battle for people who are looking for reasonable and legal accommodations, because they face disbelief that the condition even exists.

And I don’t even know, since there’s so little time in your physician appointments, are you even discussing the fact that people don’t believe you? You have so many other issues that you have to get to. So just realize that we face the skepticism, and that leads to people hiding their food allergy, and that could lead to a tragic consequence one day, because you’re embarrassed and you don’t want to talk about your anaphylactic symptoms happening.

Kevin Pho: When you read about these unfortunately tragic stories about deaths from food allergies, how does that make you feel, or those in the food allergy community feel? What goes through your mind when you read another one of these stories?

Lianne Mandelbaum: I mean, you just close your eyes and replay your own experience with anaphylaxis. You will often replay the experience. You had a positive experience, but in your mind you could replay the exact scenario that happened to this person, and it can make you anxious. It’s hard not to be. You are comforted by, again, having tools to empower you. That is really important: having the auto-injectors everywhere, drilling about the ingredients. But it’s hard not to feel the death personally. It’s really hard. I mean, I feel really sad in my heart.

I always think, “May I never know.” That’s really the first thing that goes into my head: “May I never know. May this never happen.” I could see it happening. Not the death, but I could see the mistake happening that led to this particular death. It’s such an easy mistake, or a “stupid mistake,” or “you should have known better.” But I think that’s what’s really so gut-wrenching, that anyone can picture this happening to their own child. And I think that’s why we’re often seen as hysterical, because it’s like, “Wait, it’s not your child. Why?” But it’s so relatable. It’s just so relatable. I don’t know how else to explain it.

And it’s hard, because as a parent, I pick and choose. The prom one: My son’s going to prom this year. The prom one, I told him. I don’t like to dwell on the deaths, and I don’t like to make his allergy about the deaths, and he shuts me out now. He’s 17. He’s like, “I don’t want to hear it. I don’t want to hear it.” And I actually said, “I don’t care that you don’t want to hear this. She left her auto-injector on the party bus. I need you to know that if you are going somewhere, this could happen if you don’t carry. You have to carry.”

So if there’s an actionable lesson, I do try to share it with my followers and also with my own child, because God forbid I didn’t share it. I’d like that to be the thought in his head if he leaves a bus or a car with his friends: “Do I have my auto-injector?” I’d rather be that annoying parent and be a little more paranoid. At the same time, we do walk a tightrope, not wanting to have a child with crippling anxiety, so it is a balance. But I do believe there’s a place for these stories and how we can learn from them and hopefully not have the same mistake happen twice.

Kevin Pho: We’re talking to Lianne Mandelbaum. She’s the founder of the No Nut Traveler. Her KevinMD article is titled “Food allergy tragedies: the reality that haunts us.” Lianne, tell us some of your take-home messages that you want to leave with the KevinMD audience.

Lianne Mandelbaum: Treat food allergies as a real disease. Food allergy fatalities, it’s great that they are thankfully rare, but be aware of why it may affect your patient more than you think. Be careful when you use analogies. They might make the person or the patient feel dismissed as to their worries. Instead, I would implore you to go through strategies, as opposed to lightning strikes or car accidents.

Realize food is all around. We’re just trying to look for reasonable accommodations. We want to keep our children and adults safe. We want the right medications for all people, because food allergies are a growing epidemic.

It’s important to be kind. I hope that people who are writing skits or movies are aware that portraying food allergies as funny or a weakness leads to stigmatizing adults and children with food allergies. We don’t question the need for someone in a wheelchair to use a ramp to get on a plane, but we do question people who look normal, because they’re not reacting to their allergen, pre-boarding a plane to clean the area for someone who may have been eating your allergen. It’s a reasonable accommodation. Your patients, your friends, your family, they might be encountering the skepticism on the ground and in the air, so be kind and try to be supportive.

This is Food Allergy Awareness Week, so it’s a perfect time for us to be discussing this. I mean, you can be a real support and advocate for your friend, for your patient, for your child. Just step up to the plate. It’s a legitimate medical condition. It deserves respect. Nobody asks for it. I wouldn’t wish it on anyone. And be kind. We can always be kind.

Kevin Pho: Lianne, thanks again for coming back on the show and sharing your story, time, and insight.

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