Allergy Strong Kids and Communities with Erin Malawer
Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.
Erin Malawer:
We're building stronger and stronger safety nets, and that's really important when it comes to food allergies because it's one of the disease states where you just kind of can't manage it in a silo, right. You have to rely on others to prepare your food.
You have to go to school, you have to go to work, and you have to bring your food allergies into the world, which exposes you to risk. And so these safety nets are really, really critical. And they're critical for a number of reasons. Not just because you as a patient are exposed to risk, but also because you as a community member, as the average citizen, you may be the next one to get a food allergy.
Dr. Whitehouse:
Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.
Today, I can't wait to introduce you to Erin Malawer, founder of Allergy Strong, a nonprofit organization dedicated to food allergy education, advocacy, and empowerment.
Erin has quite a long biography. She's a digital health entrepreneur and Emmy Award-winning writer and producer for the food allergy PSA "Spell it Out." And in addition to creating Allergy Strong, she's co-founder of the Food Allergy Collaborative a national coalition of major nonprofits in food allergy, working together to bring about systemic change.
She brings such a unique perspective to this work, combining her lived experience as a food allergy and EOE mom with her tireless advocacy and all of the experience that she's gained through her work. In our conversation, we explore what it really means to raise confident, capable kids with food allergies in a world that doesn't fully understand or accommodate them. Erin also gives us her perspective on Allergy Strong's work to focus on creating equality within food allergy care and management.
Erin's work with Allergy Strong centers on a critical truth. Safety and quality of life for people with food allergies should not depend on privilege, geography, or access to resources. Through advocacy, education, and community-based initiatives, Allergy Strong works to close gaps in food allergy awareness and support.
This episode invites us to look beyond individual coping and toward collective responsibility to imagine what food allergy care could look like if equity were truly at the center.
Erin, thank you so much for being here on the show to talk about Allergy Strong and all of your experiences advocating for the food allergy community. Can you tell us your background and how food allergies became such a big part of your life?
Erin Malawer:
Yeah. In fact, if you had told me 20 years ago that it was going to be the crux of what I do professionally, I would probably not have believed you. The whole thing started because my son was born with a great number of food allergies. He was the, I would say he was like the picture perfect, atopic kid.
And if you know anything about atopic, that's allergic disease, right? And they have this thing called the atopic march, which are these different disease states that tend to lead towards food allergy. He had all of them. He took every step. He should be like literally on the poster for like his face as he grows, should be on the poster.
Right within the first six months he started having eczema, but I mean like head to toe, covered in rashes, eyelids, everything. He's red in every picture that we have as a baby. And then he started getting asthma when he was an infant, like around eight or nine months old, which if you have an eight or nine month old that's gasping for error, you can imagine. It's so terrifying, especially as a new parent. It's just really alarming. And pretty soon after that he's developed food allergies or was tested for food allergies and tested positive. And since then has developed EoE and we just, we like to keep it rolling.
We like to really embody the whole thing. So it was then. Yeah, exactly. So, but it was, it was because of all of these diagnoses kind of coming back to back to back and not having grown up with with a lot of people, like most of us didn't know a lot of people growing up with food allergies, that when we were given this diagnosis and we were told that he was allergic to, you know, nine or 10 different common foods it was a, like a huge, you know, whammy of a diagnosis of, of a phone call to get, essentially we were told he's allergic to all these foods, plus some environmental things that are common in your house.
And you need to go see an allergist and pick up an EpiPen. See you soon click I made an appointment immediately, but that was three months from now, or six months from now, from that time of the phone call. And we needed to feed him dinner tonight. And what do you feed him? And so there was the immediate challenges in front of us, and I think we all face this with food allergies, right?
It's not just a once in a while thing. It's three to five or more times a day that we face these points of decision about food allergies. So it became apparent right away that we really needed information. This was before the time that Fair and most of the nonprofits existed or were present on the internet.
Not to age myself or him, but these weren't like robust times where you could really dig for information. And so I was really lucky to have a great allergist and I realized pretty quickly that, that it was lucky and that if I could get information from my allergist about all these common allergens and how to handle them in the real world, that maybe I could turn around and pass this information on to another parent who was struggling with one, two, or some portion of our allergens and make it a little bit easier for them.
And that's how I got started in food allergy.
Dr. Whitehouse:
And so did it start with your blog? Am I correct that that was the first project you took on?
Erin Malawer:
It did. It did, it started with the blog Allergy Schmallergy, and the idea behind the title was just that there was no obstacle that we couldn't overcome. It's a very, I'm from New York, it's a very "allergy schmallergy" kind of sarcastic way of looking at things, and the idea was just that we will find workarounds, common, easy, simple workarounds to any of the challenges that we face on a daily basis as food allergy parents or food allergy patients.
And that quickly picked up steam, which was so great. And it was so nice to have a community, not just that I was contributing to, but really that I was receiving a lot of support from. So I value that so much myself as a parent. And then, we were picked up on the Discovery Channel. They did a documentary about food allergies and pretty soon after that we started looking at food allergies in a different way as well as a family and started Allergy Strong, which focuses on underserved populations living with food allergies.
And Allergy Strong was born directly out of my son's, you know, sweet 7-year-old inquiry. We were volunteering at a soup kitchen and food pantry, and we were stacking the shelves with cans, but there was the soup kitchen sitting there. And I, I really wanted him to understand the value of the work he was doing.
I was explaining that there are some families that come here and they might need these services some from time to time. And he looked at me and looked around and said, but how would a kid like me eat here? And I didn't really have a good answer for him, honestly. There was a lot of peanut butter on the shelves.
There was a lot of gluten filled pasta going on the shelves. And, um. Dairy based things and no, I, I wasn't sure how a kid like him would eat well, and I did some research, and again, this was before, now there's a, a great amount of research that's out there, but this was before all that. And this sort of scant research that was available showed that families were not handling this well.
There were making very, very difficult choices. There were examples of parents deciding what child to feed for the meal that day or whether to feed their child their allergens so that they had some kind of nutrition, even though they knew it would make them sick and maybe risk a reaction.
And it wasn't, it wasn't great. It wasn't great and so we decided to start Allergy strong just to start tackling the problem. And so we work in a very community-based way and reach out and work with community stakeholders to. Educate them about food allergies and bring them to the table and give education to patients directly and increase access to resources as well as advocate for better protections for them on the federal and state level.
Dr. Whitehouse:
Right. So you are not in one specific community. You work with communities around the country, right?
Erin Malawer:
That's right. Yeah. We protect patients all across the country and even advise other communities around the world that are in similar circumstances. Yeah, so we are a national nonprofit.
Dr. Whitehouse:
So how do you identify an area that you're going to be working with and connect with the stakeholders in that specific community? What does it look like day to day for you doing this work?
It's different day to day, which is probably why I love it so much, is that I get to engage with different communities from time to time based, based on the need that's out there. I am able to speak with communities where they are, where they live, hear their issues, hear their concerns, gauge their level of access to allergists, well-educated, knowledgeable pediatricians and other primary care doctors , and then turn around and use that information to advocate for them in federal and state spaces. So we often will go and advocate for them when we talk about access to treatment. We did this when Palforzia was up for approval and we stood there and made sure that they considered the cost aspect of Palforzia as much as possible and that the need for this in all communities and how to get it there.
And that hopefully moved the needle a little bit for the FDA at the time. We'll do this on Capitol Hill and we do this in other federal spaces when necessary. And just make sure that this aspect is always being thought of when we're crafting policies and bills and laws. And when possible, I try to connect the communities that I'm interacting with, with the resources that are available nearby or elsewhere to try to just increase what they have access to and, and sort of make sure everyone's protected where they live.
Everyone deserves the right to the same education and knowledge and resources that we all have to protect their kids.
Dr. Whitehouse:
Hopefully everyone in the community understands that there is a lot of inequality, there are a lot of underserved populations in terms of diagnoses and the incidence of disease. And you know this better than I do. So can you explain that to people and help them understand who is underserved? Where are the inequities that we need to be addressing?
Erin Malawer:
Yeah. And, and I think underserved communities, I probably use it in a broader sense than might be traditional, in other areas of like nonprofit work, but there are racial inequities, racial disparities, when it comes to food allergies. Studies have shown that children that are black, Hispanic, they have higher rates of food allergies than their white counterparts. We see that some groups have more frequent reactions. For example, Black Americans have more severe reactions actually, and so we're investigating why because it's not necessarily physiological. It's likely due to some other aspect and things that we can address outside of the clinic space, or we hope to address outside the clinic space.
We also see inequities in terms of income. So there's an income disparity and lower income patients are paying a lot more for their allergy care annually, then their higher income counterparts. We know that they're using emergency rooms more frequently than their higher income counterparts, which likely means they're not getting the information or education they need about preventive care.
And so we need to create programs that really give them the information, the tools they can use to prevent the reactions from happening in the first place so they don't have to go to the emergency room. There is actually a cost savings associated with going to an allergist annually and getting information about your food allergy and getting the updated guidance.
We also see that there are geographical disparities. Depending on where you live north and south, you can have higher instance of food allergies. There's also the other geographic disparity, which is whether you live in rural, suburban, or urban areas. So for example, urban areas have a higher rate of food allergy than suburban or rural and rural areas, in fact have the lowest.
And we think that's probably, 'cause this may be partially farmland. They might have more access to outdoors, they might have more access to the good kind of bacteria that helps our guts tolerate allergens. A lot of these are hypotheses, but this is what we're seeing. So there's a lot of communities to access here that aren't getting the resources they need. And we just try to level the playing field whenever we can and connect them with what they need at the time.
Dr. Whitehouse:
One of the things that I've been learning a lot more about too is that we don't have enough allergists.
Erin Malawer:
That is so exactly right. Yeah. So there's about like three to 5,000 allergists in the country to serve 33 million Americans that have food allergies. And you can imagine it means that a lot of people are not managing their allergies with an allergist because they simply can't access them. Rural communities are a great example.
There's a distance issue that we have in place there. And in addition to the distance, we also have an insurance problem where we find that rural communities are usually a little underinsured, which means that their treatments may not be covered, their preventive care may not be covered the same way.
And so that keeps them from going to specialists when needed. And again, there's these cost savings when you go and you engage in preventive care. These wellness visits actually can save you money in addition to just making it easy, you know, easier on your body and easier on your, on your mental health and everything else.
They can actually save you money. And so, yes, and these are communities that tend to miss out. I know of people in the rural communities who will travel, you know, five, seven hours to get regular OIT treatment, oral immunotherapy treatment, which is a type of treatment, right, where you have to go quite frequently, right.
At least initially. That's a long way to go. That's a lot of travel. And then we also try to balance this with time off of work and time away from school and missed opportunities from work and other things. So, it becomes complicated quite quickly for people in rural communities or people that are not near a good food allergy center.
It becomes very difficult.
Dr. Whitehouse:
Yeah, and I think that would be another level of inequity. Not just obviously the basic treatment and education and diagnosis and access to information and epinephrine is huge. But then we're talking about all these exciting new treatments. You mentioned Palforzia and OIT. It's really a privilege to be able to access those, to have a doctor, even if you're driving a long distance that offers it, and then to have the flexibility with your employment to have the extra finances, like you said, for the gas. I mean, there are a lot of factors that go into making those accessible to some people and not others.
Erin Malawer:
Absolutely. And we keep trying to lower those hurdles and make them more and more accessible as humanly possible. We are working with pharmaceutical companies. They're aware of these problems and, and they are actively working to try to clear these barriers as much as possible.
But it is difficult and something that we're hoping we can address little by little by little. Some of this information that we've just gotten about prevention, early introduction of allergens to babies is really important so that we keep people out of the pipeline of food allergy.
But for those that are in it, we try to come up with strategies that are accessible, that are, affordable and are simple to implement that fit into someone's lifestyle. And so that's another area where we work on guidelines, we work on policy, and we work even with clinics to come up with some of these strategies that can help patients, where they are, where they live, and how they live.
Dr. Whitehouse:
Tell us what this looks like in action.
Erin Malawer:
Feeding community health, our flagship program, the one that we run year round, we've been running it for several years now, and what it does is it informs community stakeholders about food allergy education and resources and offers, practical solutions driven education so that we're teaching people how they can help starting tomorrow, what steps they can take immediately to help people and support people in their community that have food allergies.
And the way we do this is by bringing physicians, patients themselves, of course, and caregivers, as well as these community organizations like food pantries, Medicaid, WIC and SNAP programs, housing departments, social workers, community health workers. We bring them all into the same room and we offer them this practical education so they know what to do next.
The way we envision this and the way it's, it's been successfully running is that we are helping to protect patients whether they come to our event or not. Each community that we visit gets a big bolster , their community support for these patients. And so we feel really confident that this is one of the ways that we can really help patients.
So whether you have access to an allergist or not, the protections that are put in place in and around your community and the support systems where it matters, where you work and live and learn are there and helping you every day to keep you safe, , and hopefully thriving in your life. Bringing together multiple different stakeholders into the same room, we've hopefully bolstered these community networks and interconnectivity between these community members so that we can protect patients where they live and learn and work so that they can thrive and improve their lives.
Dr. Whitehouse:
I love that idea because then it's not just directly giving resources to, or connecting people with them. They can support their entire community
Erin Malawer:
We feel like we're building stronger and stronger safety nets, and that's really important when it comes to food allergies because it's one of the disease states where you just kind of can't manage it in a silo, right. You have to rely on others to prepare your food.
You have to go to school, you have to go to work, and you have to bring your food allergies into the world, which exposes you to risk. And so these safety nets are really, really critical. And they're critical for a number of reasons. Not just because you as a patient are exposed to risk, but also because you as a community member, as the average citizen, you may be the next one to get a food allergy.
There's quite a number of adults that have food allergies. It's one of the big fallacies in food allergy that I hear all the time. People really think of it as a childhood disease, and it's very much not a childhood disease. Of the 33 million Americans that have food allergies, 26 million of them are adults, and a good number of those 26 million have acquired them as adults.
They didn't grow into adulthood with the food allergy, they acquired new food allergies as adults. And with that in mind, it could be any one of us that gets a food allergy starting tomorrow. It's something that our research doesn't really yet know how to explain. So it's important that communities know how to respond to food allergies because it could be any one of us and it can't be on the patient to always respond because the patient may not be prepared.
We have more research that bears this out. There was a study out of the Chicago public school system that was studying stock epinephrine. And that is for anyone that doesn't know unassigned epinephrine, it's the unassigned epinephrine EpiPen devices or other that sit at a school nurse's office that can be used on anyone that's having an emergency, an anaphylactic reaction.
And they found that over the course of a year, 25% of those reactions happened with people including staff members, so including adults who had no diagnosed allergies. So once again, someone who just went to school thinking that we're gonna have a regular day, not knowing they had any, any risk of anaphylaxis and of course being treated with epinephrine at the end of the day.
So it just shows you how much of a community disease and what the big ripple effect of this particular condition is.
Dr. Whitehouse:
Absolutely. And people don't know that until it's too late.
Erin Malawer:
Oftentimes, yeah. Unfortunately that's true. So again, we try to connect the dots with some of this data and, um, put it into action and empower those community stakeholders who could be there. To help out in, in a variety of different ways, right? It's different. We try to impair police officers to , be able to carry epinephrine that often requires a change in law, which they're doing in, they've done it in, Illinois.
They're doing it in New York under Gio's Law, which is so exciting to see. But we try to educate them for the need for it and prime the pump in other states so that they themselves can advocate for this and become prepared and trained and, and have time to, to catch up with this law, which I suspect will probably sweep the country.
We do this with food pantries while we give them education about food insecurity and the risk of food insecurity for those who have food allergies, 'cause the risk, risk is much higher, and then how to stock their pantries and screen for food allergies when they have clients coming through the door and connect them with safe resources.
We do this in the WIC and SNAP program. Same thing. We wanna connect young, new mothers with young children and teach them about the risk of food allergies and recognizing these symptoms and early introduction feeding. So there's a lot of ways that this takes shape, and it's a little different in every sort of community with every issue, but we try to bolster the education and resources that these community members have at their disposal and connect them to other resources locally so that they can help each other. If the school nurse sees someone who has food insecure, she knows which food pantry to send that family to, that that will have the resources they need.
Those kind of examples are really important.
Dr. Whitehouse:
That's amazing and you're touching on so many of the things that need to change, that we're hopeful about. Like you're saying, this is gonna sweep the country, they're no-brainers. Right? These changes benefiting everyone, benefiting whole communities. With as much experience as you have with this, I would love to know what you think still needs to happen.
What are the biggest barriers that we need to address legislatively, socially, culturally?
Erin Malawer:
There are a lot of changes that need to happen. , I think that we need restaurants to come on board a little bit more with supporting people with food allergies. We are, we are really faithful, loyal diners. In whatever way that they can be supportive of people with food allergies, I just encourage any restaurant staff or restaurateurs to be thinking about that, moving into the future.
So that's one big way. We are 10% of everyone that you see walking through your door. 10% of every venue you go to, 10% of every baseball stadium you're in, every concert venue. Everywhere. That's not a small number. And so, I really would love people to be thinking about that as they go through their job and how just little ways they can make things easier and just become better educated about it.
So that's one of those things. I would like to see air travel get a lot easier. There's some common sense things that just need to be done. We've got the right, the right person on the job. Thanks, Lianne.
This is sort of a lofty goal of mine: we need to do better on treatment. Our treatments that are out there are really protecting people, and that's really important and we need to make sure that they're offered to as many people as we can to protect them.
So that's another area of interest of mine is to make sure that good research gets to the patient.
Mm-hmm. What do you think are the barriers to that? To the information reaching the people who need it and the access.
It, it is quite a challenge. I mean, this is a complicated disease state. I, immunology is not for the faint of heart. I leave it to the allergist to explain why, but our immune system is incredibly complicated system and so I think we are just always learning more. It is fascinating in that regard, but it also makes it really hard to communicate those things to the patient.
The other thing that's very hard when it comes to the information is it gets confusing pretty quickly in that my food allergy, you and I could be allergic to the exact same things and my food allergy could be completely different than yours. And my lifestyle might be completely different than yours, even though we're both allergic to say peanuts or dairy.
And that can be very confusing to people, not just to those of us who have food allergies. Although it's very confusing to people who have food allergies. But really it's a confusing message also to, again, the community that's trying to support us, 'cause they often say, "Well, they can eat something that says may contain, or that person's allergic to dairy, but look, they're eating that cupcake 'cause it has butter in it.
You're fine. You'll be fine."
Dr. Whitehouse:
Right. They aren't receptive to your unique situation.
Erin Malawer:
Right. And everyone's allergy really is unique to them. It makes it complicated when we're communicating these big educational initiatives. And the other thing is, look, many of us are really tuned into this topic and, we read about it all the time, but a lot of people just sort of want it to go away. And I wouldn't at all blame them. It's something that, of course you just wanna live your life and get on with it. And so they may not be reading the research that's coming out unless it hits the big news outlets. And they may not know sort of what's coming down the pike or the best practices, and again, that's where seeing an allergist on a regular basis would really, really help. Finding a doctor that really gets your condition is really important, and shopping around for that doctor is okay, and even I would say even recommended.
Dr. Whitehouse:
Absolutely. Even if you land back where you started, you know what your options are and feel like you really thoroughly made the decision that's the best
Erin Malawer:
Absolutely. That's a good point.
Dr. Whitehouse:
Yeah. So you touched on something earlier that I wanna come back to, which is obviously the huge mental health, social emotional impact of allergies. It's stressful for all of us, particularly those who are facing these inequities. Talk to me about what you've seen and what you've learned from that angle and what you think would be more helpful.
Erin Malawer:
Well, I'm glad you brought that up. Listen, again, it's a struggle for everyone. I mean, I think everyone could do better with their mental health. I think the resources that you all provide as mental health professionals is so valuable and I'm so grateful for all of it.
That said, some of these like lower income communities or, some of the communities of color, some of them had just have a bigger fish to fry right now. And they face several different challenges when it comes to managing their food allergies. One is in some communities there's a cultural challenge to it where there are some communities that don't really regard food allergies as a big deal.
They have a different approach to it, or back in their home country, of their mother or their grandmother or themselves. It, they would handle it very differently. And so, the approach can be very different. Studies show that when you're born in a different country and you come to a westernized country, you are more prone to develop a food allergy.
So it makes it really challenging for particularly cultures that have generational, sort of integration. It makes it really hard for the older generations to manage the younger ones because it's even more foreign than it is here.
So that's one of those aspects. Another aspect that we find is that sometimes in certain cultures, someone's food allergy excludes them from the culture. , An example of this would be in a lot of Asian cultures, if you're allergic to soy or sesame, it becomes very difficult to eat, especially at holidays.
And then what do you do? Right? And there's many cultures that are like this. , And so you're excluded from either a cultural event, a family event, or a religious event. And so it becomes an issue that is more than your maintenance, your daily food maintenance. That's another area I think that's a problem.
And then in with some low income communities, this just isn't their biggest problem. They're worried about paying the rent, they're worrying about buying the groceries, they're worrying about physical safety. All of this plays a role. These are different social determinants of health in that way, and overcoming them is really challenging. I sort of throw it back to you and say, what are some of the strategies for reaching these patients? 'cause there's also sometimes, not access to mental health professionals there. So, yeah, I think podcasts like this and getting communication out on social media is a great way to consume some of that mental health information that is helpful.
But it is, it is very hard. It needs to be very strategy driven and it needs to fit in the lifestyle and it's a major challenge.
Dr. Whitehouse:
Yeah. And many of the people providing the, all, the whole range of multidisciplinary services and care are not as informed as they should be about these issues specific to underserved populations. And, and I think that's another barrier. Even if you, if you have access to an allergist, to a therapist, are they understanding all of the factors that you said that are affecting your community that they might not be a part of?
So I think that just makes it so complicated, and we need so many more resources for people in so many ways.
Definitely. Underlying stress about what they're going to eat day to day, it's just there all the time. So I'm guessing it plays a role in other aspects of mental health if someone was seeking out your resources.
So I definitely encourage anyone that can to just spend a little time getting to know these disease states, and social determinants of health, because they do affect quite a lot of people. I know it's something my own son has recently said. He's the, he's abroad. We could talk about that in a moment, but he did say, he said, I'm having a great time, but I do think about my food a lot, and it's a little stressful.
It's there. It's again, underlying everything you're doing, even when you're having a great time.
Dr. Whitehouse:
Yeah. And even when it's not necessarily problematic, like I do want you to share with everybody 'cause it's so encouraging, but he's doing great and there's this acknowledgement of how much of his space, how much of his capacity is that requiring that wouldn't be on it otherwise,
Erin Malawer:
Absolutely. I'll share several things. One is he's 20 years old right now, and if you had told me 20 years ago that he would be living abroad for the whole semester, I would've died. I would've, I would've been so scared for him. But he is doing it confidently and he is doing it well.
And yet, yes, he has acknowledged that it does take up a lot of his mental space right now. And he's having a great time. And he is really, he is really thriving, but still it's there. What he is done is he's found his resources. He goes out to eat quite a lot, which is good news for everyone.
And he's got a lot of the common allergens again. These aren't obscure allergens. These are all the common ones. But he is eating out a lot. He's traveling a ton and he is making it work. But it takes preparation, it takes extra thought. It takes, sort of that advanced thought process about where's the nearest urgent care facility? Do I have my epinephrine with me? Can I read the menu in this language? Do I know what the menu? 'cause in Europe, they do code all the menus for the common allergens. Do I know those codes, what I'm looking for? Do I know how to ask? He has to really think about that on a day-to-day basis. But he's doing it.
And, and so while it is stressful and an underlying part of his experience right now, I also think the flip side is that he's really become very confident about this. And I think he's very proud of overcoming this mental hurdle of going and the challenge of being there and adapting to not just one culture, but now, multiple cultures based on where he is every couple weekends.
Dr. Whitehouse:
I think it's great. So, it is nice to know, and I say to anyone out there, it can be done. I swear it can be done and it should be done. And there's a lot of good in, in facing the challenge.
Erin Malawer:
Absolutely. So much growth.
He's learned so much. It's been such a positive experience. I'm so thrilled.
Dr. Whitehouse:
That's awesome. For those of us who are still in that, " it's so hard to imagine that ever being possible," what do you think are the biggest things that made this a success, that helped to prepare him that you did, or that you saw him do on his own to get him to be able to do this so successfully?
Erin Malawer:
I think there's a lot of things. I think that we approached this particular challenge rather than approach it with fear. We approached it with like, can do. I mean, there's news stories and reports and articles of things that didn't go well, but we focused on what could go well, where his resources were, how to be prepared.
And we practiced a little bit. We looked at menus, we looked at the coding. They code their allergens on menus, as I said by number. So we kind of worked that out. We sent him some advanced resources so when he landed, he knew where he could go. We looked up, you know, it's not healthy, but is the McDonald's manufactured the same way you can find McDonald's in most countries?
So we kind of played out a few scenarios, and that really helped. And you can ask for accommodations too. He has an apartment that has a kitchen, which he uses very frequently. We talk to people that also had an allergy that went abroad. That's great. It, it just shows you it can be done.
But I think approaching it with like this, it's a challenge to overcome rather than it's a brick wall, it was really helpful. We went there with really with like a positive attitude and like a adventurous spirit that helped a lot. But there are other kinds of conversations that if you have younger kids that are difficult, and those are always interesting, like talking to your children about kissing it.
As it turns out, kids don't really like talking about that stuff with their parents. Shocking. Or talking about alcohol and parties and things that can really trip up food allergy management later on. And so you'll know when the right time to talk about it is when it's on your brain.
They might, when they're still a little bit young for it, but it's on your brain that's basically the right time, a little earlier than you think you need it before they're doing it is the right time so that they again, are prepared and have the tools and, I know even with my son, even for going abroad, we talked about like, what can you say, not just foreign language, but.
Even in English, what can you say to say no to certain things? What kind of, positions might you be put in or situations might you be put in where all your friends are going out and it's late at night and they wanna grab this to eat and you're still hungry, but you can't eat there.
How do you manage that with your friends, your new friends? Just practicing those scenarios was really helpful then and now. So we kind of took the tools from then and brought them to now.
Dr. Whitehouse:
That's a great point because when they're young, we think about, okay, check: we talked about kissing. Check: we talked about alcohol. But once they're past that, those skills are all still useful. New scenarios. Let's talk through that one. Let's get some prepared responses, some resources. It all still applies.
It really helped a lot. And I think it, it just gives them like the confidence to say like, I know how to respond to that if it comes up. And there have been many times where those kind of scenarios have come up and my son will write me like, I, we did it just like we practiced, done.
Like it was so, it was so easy and it's great 'cause he feels protected and not ostracized. You have time to practice it so you don't fumble in the moment. and think through really what you need in any moment. And sometimes his improvisation was better than what we practiced. That's great. That's great.
So he's used that a bit on this trip as well, where he needs something different than what this group is doing, especially when you're abroad, you tend to function in groups a little bit more. And so, his requirements are different than everybody else's and he needs to advocate for himself and be confident about that.
And it helped to have a little practice.
Dr. Whitehouse:
Yeah, it's so encouraging. Thank you so much for being willing to share that, and I'm so glad he's having so much fun over
Erin Malawer:
He really is, he is having a great time, a great time. It's really, I'm so thrilled that he gets to have these stories and experience the culture of being somewhere else and being a place that's vastly different than here. I think that's so important. And, you know, he said something that I think was so great and it's a great thing to think about. He's in Central Europe, and he said, so I won't eat goulash.
That's not what I need from this experience is to come back and love goulash. I need to understand what this part of the world's about and how the people interact with each other and he is using the language and trying a different transit system and all these things have given him so much confidence.
It really thrills me. Every new story I get, I'm just like, gobbling up and just, it warms my heart. It makes me so thrilled.
Dr. Whitehouse:
Well, you talked about your can-do attitude and obviously that has rubbed off on him and he's maximizing that as he's having this experience. But I, I mean, I'm so impressed with you. Thank you so much for all you've done and facing this huge problem that affects our community. It's unbelievable to me that you could then say, "okay, here's what I'm going to do," and find this huge chunk of it to bite off and, and to tackle.
It's so impressive and, and it's so helpful. So thank you for all the hard work.
Erin Malawer:
Tt's truly a labor of love. I love doing this. I'm really passionate about it and I really love connecting with other people in our community. We all are dealing with something that's really challenging and I've met so many amazing, impressive, intelligent people.
I just, I can't say enough about that. That's truly my favorite part of this job is connecting with people from all over the country. It just, it makes me so happy. It's a complete pleasure.
Dr. Whitehouse:
Well tell everybody else who wants to support you, how they can do it, how can they follow Allergy Strong, and then how can they support your initiatives.
Erin Malawer:
Well, we're all over social media at Allergy Strong, so please follow that and reach out to me. You're welcome to dm. I will look at all of that stuff myself. And so I, I love connecting with people and hearing their stories and hearing their experiences. So please share that stuff with me. I would love it.
And the other thing is we have feeding community health that is ongoing. So you can also connect directly with that program if that's the particular program that interests you. And that's at Feeding Community Health. I think we're on Instagram and LinkedIn. But if you follow me, you'll see that as well.
Just reach out if you're a community organization or you know of one, that supports people with food allergies, please send them our way and I would be happy to send them some information.
Dr. Whitehouse:
I'm so happy to know you and to learn more about what you're doing that already just kind of amazes me, but I appreciate even knowing it more on this level. So thank you so much for being here, and we'll definitely have to have you back. There's so much more to talk about.
Erin Malawer:
I would love it. That would be so much fun. Now I wanna just interview you on this podcast.
I wanna get on your podcast and interview you!
Dr. Whitehouse:
Thanks for being here.
As we close today's conversation, I want to invite you to hold this episode not just as information, but as an invitation to widen the lens on food allergy care. Erin's work with Allergy Strong makes something very clear. Managing food allergies isn't only about individual vigilance. It's deeply shaped by our systems, and as they stand right now, those systems don't support families equally.
Here are three ways that you can take what you heard today and turn it into action First, follow and support Allergy Strong. You can find them on social media at Allergy Strong or@allergystrong.org. , Follow them and share their work so that it reaches the families and institutions that need it most. Second, if you haven't already, watch the PSA spell it out.
Consider sharing it with your child, with their school, with people in your life or your workplace to help them better understand allergies.
And third, consider your own experiences and acknowledge if there is emotional weight of navigating unequal systems in your own life. When protections fall short, families absorb the stress and that ongoing vigilance can impact mental health, relationships, and overall wellbeing.
If this resonates, please seek support, whether it's through community, therapy, or getting involved in advocacy, and share with anybody else who might need to hear the same message. Thank you for listening, for staying open to these conversations, and for being part of a movement toward food allergy care that is not only safer, but more just.
I will talk to you next week.
The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.