Amanda Painter is part of the group behind the Teal Pumpkin Project, a campaign to make Halloween safer for children with food allergies. Here’s her story.
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Food Allergy Community of East Tennessee (FACET)
Teal Pumpkin Project
“Food Allergies: Reactions on the Rise”. An infographic “that delves into the top allergy producing foods, the main reasons why these (at times deadly) allergies are on the rise and what to do if an allergy attack occurs.” Thanks to Kiersten Bush at Ghercich & Co. for suggesting this resource.
This transcript may differ in minor instances from the audio content. Please notify Josh Morgan of any errors you may find.
Monologue by Josh Morgan
This is The Plural of You, a podcast about people helping people. I’m Josh Morgan.
I’m a sociologist and a writer, and I use this podcast to share stories from people who are making a difference in the lives of others, people like you and me. You can read along with the transcript for this episode at pluralofyou.org/015.
Amanda Painter is a food allergy advocate from Maryville, Tennessee, and the Director of Education and Development at FACET, a nonprofit organization that assists families managing food allergies on the eastern side of her state. FACET has only been active for a few years, but its projects are making a huge difference in raising food allergy awareness. Their most well-known project so far has been the Teal Pumpkin Project, a campaign that seeks to make Halloween safe for trick-or-treaters with dietary restrictions. I talked with Amanda recently about FACET, about the Teal Pumpkin Project, and her experiences as a food allergy advocate. I’ll play our conversation in a moment.
I contacted FACET mostly to talk about the Teal Pumpkin Project, but I was surprised by how much I learned from Amanda about issues surrounding food allergies. She told me that food allergy cases have practically doubled over the last twenty years or so, which doesn’t surprise me, but I didn’t expect that social problems related to these conditions are also increasing. For example, we talked about how kids with food allergies can face isolation and bullying. Then there are conflicts from those who resist changing school menus because they don’t understand how severe food allergies can be. That’s why I’m glad I found out about FACET: they’re working to draw attention to food allergies and untangle the uncertainties around them.
I read a little about the history of allergies as a medical concept for this episode. It has an intriguing story but it can be a contentious subject. The increase in food allergy cases has been linked to a few possible events, including increased food variety, increased cleanliness in our homes, and our increased consumption of food additives, but so far no one has identified an exact cause.1 The concept has been further confused by laypeople diagnosing themselves over the years after unwanted reactions to all sorts of things,2 and I suspect that’s why some who don’t know any better today are dismissive of food allergies as a medical problem.
There’s no denying that food allergies are real and can be harmful, but asking people to accommodate those who have to avoid certain foods assumes conversations that some communities are still waiting to have about compassion and care. FACET is one of many groups that are working to make those conversations easier. We hold strong norms about the foods that we eat, and something as mundane as a peanut butter and jelly sandwich can be a value-laden symbol.3 Removing it from a cafeteria can be a lot like removing a flag or a statue. That may sound silly, but it can be offensive to some people. Like you’ll hear Amanda say, there are many strategies for managing allergy-inducing foods that seem to do well with team effort and include everyone’s social and dietary needs.
The Teal Pumpkin Project is but one of FACET’s initiatives, and I encourage you to read more about it and try it out. It might not be a big deal to you, but it could mean a lot to children in your neighborhood who struggle with food allergies and the anxieties that come with those.
Here’s Amanda Painter, Director of Education and Development at FACET.
Interview with Amanda Painter
JM: Hi, Amanda. How are you doing?
AP: I’m doing well. How are you?
JM: I’m great. How was your week?
AP: It was great. I actually spent the week at Disney World. We just got back yesterday.
JM: Oh! Well! That was fun.
JM: If you wouldn’t mind, would you tell me about FACET and what services you provide?
AP: Sure. FACET is focused on food allergies. We work to raise awareness, share education, and work on advocacy, all within that realm. We’re a nonprofit, and we work on that within two capacities. One is the outreach, and that is working on community awareness, educational presentations, and that type of activity. The other piece of it is working with the individuals and the families that are managing food allergies. We offer them support and education through support group meetings, one-on-one mentoring, workshops, and food-free children’s activities.
JM: What are the major problems that you and FACET are looking to address?
AP: Food allergies can be incredibly difficult to manage, especially initially after a diagnosis. It can affect physical and emotional health, and can greatly impact the social aspect of someone’s life. Proper management can take a while to learn everything you need to, and often that’s more than can be taught in one doctor’s appointment.
That’s where we step in after that, helping these individuals manage those issues and problems. We’re able to help them learn the proper prevention steps and how to always be prepared for an emergency. We’re also able to help those in the community that care for children or assist other adults that have food allergies so they can do that properly, as well.
JM: How common are food allergies? I know there are different ones. Would you be able to describe some of the more frequent ones?
AP: Sure. Food allergies are a growing problem, which is probably part of the reason why we are talking about this today. It’s getting a lot more media presence. There are more studies that come out, more statistics. The most recent statistic is that there are 15 million Americans with food allergies, and 6 million of those are children. It is disproportionate to more children having them. The most recent CDC number shared with us is that there was a 50 percent increase in children with food allergies from 1997 to 2011. We are seeing a huge uptick in this.
JM: Oh, I didn’t know that.
AP: The top eight most common allergies in the United States are milk, soy, egg, wheat, peanut, tree nuts, shellfish, and fish. Those are what are commonly referred to as the Top Eight. However, you can be allergic to any food. There are 170 different food that [are documented as] causing allergic reactions.
JM: What allergies do you find yourself talking with people about the most?
AP: Peanut and tree nut allergies are the most common, especially the ones that we deal with. Often with younger children, we see a lot of milk and egg allergies. Milk and egg are the ones that are the most common to be outgrown. It’s not a guarantee they will be outgrown, but they are common. There are a lot more younger children that have those. Hopefully, every child will outgrow those. We deal with mentoring a lot of families that have young children, younger elementary, toddlers, and down from there, that have milk and egg allergies.
JM: I was wondering if it was common for allergies to be outgrown, but it sounds like some can and some can’t.
AP: It varies. Those numbers are always changing, but milk and egg are most often outgrown. Again, it’s not a guarantee. Peanut, tree nut, fish, and shellfish are less likely to be outgrown, but there are still cases where that does happen.
JM: I’m also curious about severe food allergies. Are those more widespread than the public may know about? Are there more people with severe food allergies that might cause anaphylactic shock? That’s something I wasn’t aware of until I discovered you and your work.
AP: Yes. Those numbers that I mentioned earlier from the CDC are for those that are reporting a severe food allergy. Often, we think of peanuts and maybe tree nuts when we think about severe food allergies, but it can truly be anything. As I mentioned, milk and egg, they are also likely to cause anaphylaxis. Since they aren’t the top ones, they are the ones that are reported to having those reactions as often, but there are documented cases of anaphylaxis and fatalities to any of those top eight that I mentioned, as well as any other food.
JM: What can life be like for someone that is dealing with a severe food allergy?
AP: It can be challenging. It’s incredibly overwhelming at the point of diagnosis until you really get your footing and realize what you’re dealing with. It can affect the emotional health of the individual and the caregiver, which is often what we deal a lot with parents that have an infant or toddler that’s just been diagnosed. Emotional problems can range from fear and anxiety to social isolation and depression. Sometimes there can be marital and family tension, depending on what the circumstances of the family are.
There could be, depending on what the allergies are, some nutritional deficiency. Sometimes we’ll see infants and toddlers and young children have a hard time with proper weight gain due to their restricted diet. This is especially common with those that have a milk allergy.
There’s a lot of time and money spent with doctor’s appointments, testing, buying epinephrine auto injectors, which are expensive. This can place a burden on the family, which sometimes can lead to those marital problems.
JM: What do those injectors help with?
AP: The epinephrine auto injector is the only medication that can reverse a severe anaphylactic reaction. If you are diagnosed with a severe food allergy that has the potential for anaphylaxis, you must have your epinephrine auto injectors with you at all times. Those are expensive, depending on your insurance. You need to have at least one set with you at all times. They have to be replaced when they expire, which is usually every 12 to 15 months. This is a cost that is incurred every year for these families.
JM: How have food allergies affected you or your family?
AP: I have a child with multiple, life-threatening food allergies. As I mentioned for others, it was the same for us at the beginning. It was overwhelming, and it took some time to get a firm diagnosis of all of the foods that she was allergic to down, for us to make sure she had proper weight gain, and a lot of time to really be fully educated so that we could be managing it competently. When her first reaction happened, I had no idea at that point in time that my life was going to forever change.
JM: I was wondering what that process was like.
AP: It affects every day of our life. Every meal and snack has to be planned ahead of time. Spontaneity isn’t really doable for our family. With her allergens, we make the majority of her food at home from scratch and a lot of time researching food products to find what is safe for her and what isn’t, contacting manufacturers. There’s a lot of emails, phone calls, meetings with school and friends to make sure that anytime she’s outside of my care that she’s properly cared for. Lots of planning and preparation.
JM: How old is your daughter now?
AP: She will be six next week.
JM: How did you get involved with FACET?
AP: I became involved after my daughter had her diagnosis. I started looking for local organization to see if there was someone who was out there doing something in this, close by to me. FACET was just in its beginning stages at that point in time. It was some people getting together for support group meetings. I started going to those. I have some background with volunteer work and nonprofit board development, so it was a good fit.
With anything in my life, especially when it comes to food allergies, I feel that finding something to be positive and productive with is a really good place to put my energy and my time instead of allowing all of that extra time to be spent dwelling on the negative and the worry and the anxiety.
JM: Oh, that’s a good point. I wouldn’t have thought of that.
What is your role at FACET? What’s a typical week like for you?
AP: I have a few different roles. We serve the entire east Tennessee region. One of my roles is a chapter coordinator, which is for my county and a few neighboring counties. For that, I serve as the go-to support person for everyone in those counties. I facilitate and plan support group meetings and other workshops for these individuals, as well as educational presentations for educators or organizations in that region.
I also work as the Director of Education and Development. With that, I work on developing and writing educational materials and presentations that are used by all of FACET’s leadership team when promoting awareness and education.
JM: I found out about you and FACET because of the Teal Pumpkin Project. I was wondering if you could describe that project.
AP: Yes. The Teal Pumpkin Project is a Halloween project that works to promote a safer and happier Halloween for all kids. The concept is that you would paint a pumpkin teal or, more simply, you could just print out a sign with a teal pumpkin on it and have that on your front porch on Halloween. That is to signify that you have non-food treats available for children that are trick-or-treating that have dietary restrictions.
This by no means says “Don’t hand out any candy.” Hand out whatever you normally hand out, buy your favorite Halloween candy, but also buy a few items that are non-food so when that child does happen to come to your door, they still get something they can take home and enjoy that night.
JM: What are some non-food items that you would recommend?
AP: The list can be very long and expansive: stickers. Particularly popular are glow sticks and glow bracelets, anything that glows, the children really enjoy those on Halloween night. Rings, vampire teeth, crayons, bouncy balls, all kinds of things.
JM: Okay, so toys.
JM: Where did the idea for the Teal Pumpkin Project come from?
AP: The Teal Pumpkin Project was actually started by FACET’s founder, Becky Basalone. She started this with her family, with her two boys. They painted a pumpkin teal and put it on their front porch one year and used it as a conversation starter. We promoted the teal pumpkin here locally in east Tennessee.
Last year, in 2014, FARE, which is Food Allergy Research and Education, which is the national food allergy nonprofit, picked up on the idea and asked Becky if she was okay with them promoting it. Of course, we were. She was happy to have that spread nationwide, so they were able to use their much larger reach than ours here in east Tennessee to spread it across the country.
JM: What’s the response been like since FARE picked up the idea?
AP: It’s been overwhelmingly positive. A lot of other food allergy advocates—we have quite a network with other leaders in other parts of the country—have been very excited about this. It’s a very simple awareness piece that everyone can do and everyone can participate in. You’re not asking someone to something really long, or takes a lot of money or a lot of time. It’s something very simple that anyone can participate in.
JM: Do you have any specific stories of families you’ve helped, for example, or organizations that you’ve spoken with that you like to think about?
AP: I particularly done a lot of preschool presentations here within the last year. This has been really rewarding for me because preschools have a little bit of a different aspect of how to manage this versus a public elementary school, where there is a school nurse and a director who handles all of these medical issues and can teach everyone how to handle it. Preschools don’t have this. I’ve had a lot of preschools coming to us asking for help.
The preschool age is really important. Oftentimes, these families are just learning about diagnoses and are in a little bit of flux. Leaving your child with someone and trusting they’re going to care for them correctly is really hard. It’s great to be able to leave those preschools, know they’re doing a good job, and that they care about it.
JM: Yeah, that could be scary. I never considered that.
AP: It can be quite difficult. On the flipside of that, that’s a lot of our mentoring with individuals, when it comes time to take their child to preschool, elementary school, or any type of transition like that; where they’re having to let go and they’ve got to trust someone else to care for their child.
JM: Have you or has FACET been involved in any policy decisions in the area?
AP: We were supportive and helped somewhat in some Tennessee legislation that happened in 2013, which was the passage of a voluntary stock epinephrine program for schools. This did not mandate that schools had to stock epinephrine but it did say they could voluntarily do this.
Stock epinephrine would be having these epinephrine auto injectors on hand at school that are undesignated. It would not be a particular child’s prescription. These auto injectors would be there for if a child forgot their auto injector at home or didn’t have a diagnosis but had a reaction at school. These are on hand so that the child can be treated at school, and they don’t have to sit there and not doing anything until emergency services arrive.
JM: Just to clarify, was there something preventing schools from stocking those injectors before?
AP: Epinephrine auto injectors are only available with a prescription. Before this legislation passed, you could not write a prescription to anyone but the individual. Now that this legislation has passed, the prescription can be written to a school so that it’s undesignated.
JM: Okay, that makes sense.
How might issues of food allergy awareness affect people who don’t have to deal with it on a day to day basis?
AP: With the numbers growing, odds are that most people know of someone that has a food allergy. It’s important that we support them in some way, help them make healthy choices, and make sure they always have their medication with them.
Also, for those that work in the food and restaurant industry, there needs to be a general understanding about food allergies and how to properly handle food; if you have that request for an allergen-free meal from whatever allergen that may be, how to properly prepare that and avoid the cross contact in the kitchen.
Those that care for kids with food allergies—teachers, coaches, church staff, anyone else that cares for children—they need to have the understanding and knowledge of how to prevent a reaction and how should you be prepared if a reaction does happen.
JM: Are there any common misconceptions about food allergies that you’d like to correct? Maybe things that you catch in the media that you’d like to address?
AP: Yeah, there are several misunderstandings. This is just part of something that wasn’t that common before and is becoming more common now. There’s just not as much general information out there and knowledge. Food allergies can be life threatening. There are still people out there that don’t believe that eating the wrong food could truly cause a fatality, and it can.
It’s important to know that anaphylaxis is unpredictable. Some people may have a diagnosis and say they only had mild symptoms for the ten times that they’ve been exposed to that food. If they have that diagnosis, there still is that risk for anaphylaxis. You still have to be prepared.
One of the biggest ones that we come across and are always working to dispel is that antihistamines will not stop a severe reaction. You must use epinephrine to stop a severe reaction.
JM: When I’ve talked with people in the past about food allergies and food safety, I’ve noticed that some people can be defensive about limiting food options. For example, I was talking with somebody not long ago. They mentioned that a school near them had removed peanut butter and jelly sandwiches from their menu because of peanut butter, and they seemed to bring it up to complain about it.
I was wondering: How do you help people understand that some foods need to be managed to help those with food allergies?
AP: The banning of peanut butter in schools is a very hot topic, and it’s a very controversial one on both sides. It’s important to remember this is something that is life threatening. If you’re being asked to refrain from a certain food, there is a legitimate reason for that. No one would want their child to be the cause of another child having a life threatening reaction or to have their child watch their friend have a life threatening reaction.
On the other side of that, with the peanut butter bans in a lot of schools, I would say that there are a lot of ways that we can prevent reactions without banning something 100 percent. We work to promote more that we need to have allergen-free classrooms. Children need to be able to focus on their education and not be worried about did the snack at the desk next door get on the floor, touching school supplies with peanut butter on their hands or whatever it may be.
We work more [so] that, let’s eat in the cafeteria and let’s keep the classroom allergen free. In the cafeteria, let’s work on steps to keep that child with whatever allergies away from the food but in a proper way without isolating them. Some schools will sit them at a different table.
Peanut butter works a little bit differently this way than other allergens. If you’re only managing a peanut butter or peanut allergy, peanut butter is the main issue. You could have kids that bring peanut butter sit on one side of the table and the child with the peanut butter allergy sit on the other end of the table. That’s a pretty easy way to do it, have the kids wash their hands after lunch, then have everyone go about their day and be fine.
When you start talking about banning foods completely, it gets incredibly difficult when you start looking at the other allergens. It’s virtually impossible to ban egg and soy and milk from a cafeteria.
JM: Seems that way.
AP: It’s really more about finding those prevention steps: good handwashing, some strategic seating in the cafeteria, teaching children that have food allergies how they can self manage. Don’t touch anybody else’s food, don’t let anybody else touch your food. Really good supervision when they’re in the younger grades when they don’t have that impulse control down yet.
Also, teaching their peers—this is such a big part of this. We need to teach their peers how to support them, why you don’t share food and why you’ve got to wash your hands afterwards. They don’t want their friends to be sick. If we start them at a young age, then we will really help build a more supportive culture that, as they get older, there won’t be the bullying, and they won’t be the person that’s so resistant to not eating a particular food at a particular time.
JM: You know, I hadn’t considered that these allergies could result in isolation and bullying.
AP: That’s really the most common concern of parents of children in elementary [and] middle school. If someone brings in cupcakes one day, their child doesn’t have one. It’s the school policy that their child sit at a table by themselves at lunch so they don’t come in contact with their allergies. There’s better ways to do this. It takes a lot of work, a big team approach with the school on how to keep the child safe, but you’ve got to keep them included at the same time.
JM: Does your work overlap with any other types of allergies that aren’t involved with food?
AP: With food allergies, it’s highly related with any type of allergies: environmental allergies, asthma, food allergies, and some skin conditions all come together. Many people that have food allergies are also managing asthma and managing environmental allergies. There’s also the concern and likelihood that there could be latex allergies and bee sting or other venom allergies, which both could also be fatal and would be treated with the same epinephrine auto injectors. Some of our families that we manage are also managing these other conditions.
JM: Do you have any insight as to why allergies in general may be increasing?
AP: That’s a very loaded question.
JM: [laughs] I know that’s a broad, broad question.
AP: [laughs] I don’t have the answer. If I did, I’d be a millionaire.
There are a lot of different theories, and there’s a lot of research that’s happening right now in finding a cure but also trying to find the cause. A lot of the general consensus is, if it was one specific, individual thing that was causing this, they would have figured that out by now. The thought is that it is a multitude of environmental things happening, causing changes with our bodies, and environmental items that we are coming in contact with that are culminating together and causing this shift.
JM: What do you enjoy the most about working with FACET, as far as helping other people?
AP: I think that’s really it: being able to help other people. Once I had this diagnosis in my family and we went through an extensive amount of time of researching and reading, I wanted to be the most knowledgeable I could be without having gone to medical school.
Once I got to that point and our family was managing confidently—we still have our stressors and items that come up, but we’ve got it managed and we’re doing a good job day to day. I have all of this information, knowledge, and experience now, and I feel like it’s important that I share that with other people that may not have a good support system and maybe struggling to manage this on a day to day basis.
It’s incredibly rewarding to be able to help these individuals work through the diagnosis, help them learn how to read food labels, find proper food for their kids, and to make those personal connections. [To] support them along this journey is pretty amazing. It can be pretty emotional but rewarding to help families cope post-reaction, when they’ve had a really close call, and help them work through their fears and their anxieties, investigate what caused the reaction, and develop a plan to move forward. It’s pretty rewarding to know that I’m the person they come to with their challenges, and I take that very seriously. I want to give them accurate information and support them along the way.
It’s also incredibly satisfying to know that I’m the person they share their successes with. I get a lot of emails, phone calls, and texts when they’ve tested that they can have a food again and they passed that in-office challenge, or their child has learned how to self manage. They never thought their child would say no to somebody handing them a piece of candy, but their kid did. It’s a really big milestone for that family, and they still reach out and let me know those. I’ll get a phone call after a successful meeting at a school that a parent had before their child is enrolled, [saying] “Oh my gosh! I was prepared. You helped me do that, and everything’s going to be okay.”
It’s challenging and it can be emotional, but we also get the good aspects of it, too.
JM: Looking forward, what gives you the most hope about issues surrounding food allergies?
AP: There’s a great amount of research being done for a cure. We still hold onto hope that will happen at some point in time. In the meantime, the food allergy awareness mission is growing. A lot more people are becoming aware and they’re being supportive. We’re developing communities that are helping these families instead of being resistant, not understanding, and putting up those walls of isolation.
The compassion is growing and the understanding that these families need support, and that we can all pitch in and help them.
JM: I’m glad to hear that.
What would be the best way for listeners to follow you or FACET online?
AP: For FACET, we have a great website, which is joinfacet.com. While we are based in east Tennessee, that still has great, general food allergy information that would help anybody, regardless of where they lived.
JM: I did notice there was a lot of good information on the site. You did a good job.
AP: Thank you. We’ve got great connections with some agencies that do research in a lot of the medical-based information. We also have a wonderful medical advisor who is a board certified allergist. That helps us make sure that everything is accurate and reliable.
We’re also on Facebook and Twitter, which is the same. It’s slash joinfacet on Facebook, and Twitter is @joinfacet. I also write a blog for our organization, and the blog is Facet Advocate. I’m also on Twitter @facetadvocate. The blog’s also on our website.
Also, we talked about the Teal Pumpkin Project earlier. For those that want more information specifically about that project, they can go to tealpumpkinproject.org.
JM: Is there anything I haven’t asked that you would like to talk about?
AP: I would say for those that are listening that manage food allergies, please always have your auto injectors with you. They can’t save your life if you don’t have them with you.
It’s important to pass along that teens are at the highest risk of anaphylaxis. Here recently, the fatalities that have been covered by the media have been teenagers that have made a risky choice with what they ate, and they did not have their epinephrine auto injectors with them. I always want to pass that along, that if your doctor prescribes them, then you need to have them with you at all times.
For those that don’t manage food allergies but know someone that does, encourage them to make those healthy choices and always have their medicine on hand. Ask them how you can support them if an emergency does happen. That way, they can be prepared and you can be prepared to help them make those right choices.
JM: Okay. Well, that’s all I have.
AP: Well, thank you.
JM: Yeah. I really appreciate your time. This has been great.
AP: We appreciate the opportunity to share a little bit more awareness and promote the Teal Pumpkin Project in October.
JM: Yup! I hope you have a good night.
AP: Wonderful. Thank you!
Conclusion by Josh Morgan
This episode of The Plural of You was produced by me, Josh Morgan, in colorful Edinboro, Pennsylvania. Mike Martinez created the music.
You can find show notes, past episodes, and other resources at PluralofYou.org. Please follow me on Facebook and Twitter at PluralofYou; I’m building a community of people who care, and I’d like for you to be a part of it. You can subscribe by searching for The Plural of You wherever you get your podcasts. If you’re listening through iTunes, please leave a review for The Plural of You because that’ll help others find it, too.
In closing, here’s a homework assignment.
If you’re listening in October and like to entertain trick-or-treaters, visit tealpumpkinproject.org to see how you can help kids with dietary restrictions have a fun and safe Halloween. It can be an easy opportunity to spread compassion and get to know members of your neighborhood. If you’re listening at some other time of the year, take a few minutes and check out Amanda’s blog. It’s really well done, and it’s obvious she puts a lot of time into it. If nothing else, I’m sure that reading her perspective will make you think a little more warmly about people in general. She and FACET truly care about others, and I hope you’ll find their commitment inspiring.
That’s all for now. Thanks for helping.
- See this page for an overview of potential causes for food allergies. (Back to citation.)
- For more on the medicalization of the concept of allergies, see this article on the rise of food allergies and intolerances. The author’s tone seems a bit dismissive of those with legitimate food allergies, but some of his insights are still worthwhile. (Back to citation.)
- The sociology of food is a fascinating branch of sociology that is too large to summarize here. One book that examines the moral and social meanings of food is The Sociology of Taste by Jukka Gronow. (Back to citation.)