Don't Feed the Fear: Allergy Anxiety & Trauma
Welcome to "Don't Feed the Fear," where licensed psychologist Dr. Amanda Whitehouse offers expert guidance on managing the social and emotional challenges of food allergies, celiac, and related conditions. Tune in for compassionate advice, practical strategies, and inspiring stories to help you navigate anxiety and trauma with confidence and resilience.
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Theme song: The Doghouse by Kyle Dine, www.kyledine.com
Used with permission from the artist
Full transcripts are available to support accessibility and inclusive listening: https://www.thefoodallergypsychologist.com/dont-feed-the-fear-blog
Don't Feed the Fear: Allergy Anxiety & Trauma
#65 Kyah's Legacy: Food Allergy Education and Advocacy
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Lisa Cohen created the Kyah Rayne Foundation in honor of her daughter Kyah, who died following to an allergic reaction.
As we approach Kyah’s birthday on March 17, Lisa shares Kyah’s story and the mission behind the foundation, with a focus on food allergy education, epinephrine access, and the importance of knowing how to respond in an emergency.
Together, we discuss common misconceptions about epinephrine, why hesitation can be dangerous, and how education empowers individuals and communities to act with confidence. This emotional conversation honors Kyah’s life the best way her mother knows how: with life-saving insights for families, caregivers, educators, and anyone who wants to be better prepared.
https://www.kyahraynefoundation.org/
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
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We're hoping with the training that you will be prepared and not scared. We have a food allergy epidemic. And of course, there's one remedy, one remedy for anaphylaxis, and that remedy is epinephrine.
SpeakerWelcome 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..
Amanda Whitehouse, PhDToday's episode is a tender conversation that is rooted in love, loss, and a deep commitment to preventing future tragedies. I'm joined by Lisa Cohen, founder of the Kyah Rayne Foundation, which she created in honor of her daughter Kyah, who died as a result of an allergic reaction. As we approach Kaya's birthday on March 17th, this episode is a way to continue honoring her life and the legacy her family continues to build through education, advocacy, and awareness. In our conversation, Lisa shares Kyah's story and the mission behind the foundation with a particular focus on why food allergy education and epinephrine access and use are so critically important. We talk about the misconceptions that still exist around epinephrine, the hesitation people feel using it, and why knowing how and when to act can truly be the difference between life and death. This episode is not about fear, though. It's about knowledge, preparedness, and honoring Kyah by making sure more people understand what allergic reactions look like and how to respond when they happen. I'm incredibly grateful to Lisa for all of the work that she has done for our community, for her courage, for honesty, and her dedication to turning her unimaginable loss into lifesaving advocacy. Lisa, thank you so much for joining me here on the podcast today. I'm so honored that you are willing to share your story and talk about your beautiful daughter Kyah with us for the benefit of all of our kids, all of the food allergy community. Thank you for joining me.
Lisa Cohen, Kyah Rayne FoundationThank you for having me, Amanda.
Amanda Whitehouse, PhDI would love to start by talking about the reason that you're here and the reason that we're chatting. Your daughter Kyah Rayne. Can you tell us about who she was? What you want us to know and remember about her as a person?
Lisa Cohen, Kyah Rayne FoundationYes, I love talking about Kyah Rayne. Losing my daughter to anaphylaxis from an accidental peanut exposure changed my life. She was 21 when she passed. She was vibrant, creative, smart, deeply loved. She was careful. But like many young adults, she wasn't always diligent about carrying her EpiPens with her everywhere. She accidentally came into contact with a peanut and didn't have her epinephrine. Subsequently we found various medications in pharmacies where we were we stuck her with everything, every kind of adrenaline, and epinephrine. And, um, after seven minutes, um, she was dead in my arms. That's what happened. And shortly after that I founded the Kyah Rayne Foundation in her honor.
Amanda Whitehouse, PhDIt sounds like you were very determined and knew very quickly that after experiencing a tragedy like that, you knew you had to put this into some action, and were on top of it right away.
Lisa Cohen, Kyah Rayne FoundationYes, I, I founded KRF, the Kyah Rayne Foundation really. To transform my heartbreak into action. I'm really proud of the platform and it's evolution. We provide education and preparedness and access to emergency epinephrine, the work is about making sure that no other family experiences the loss that mine has. Sadly, the statistics for food allergies, food allergy emergencies, emergency care, the access to epinephrine is, staggeringly high, and really needs the kind of attention and awareness that we hope to bring to, to the public. I feel very responsible to do that.
Amanda Whitehouse, PhDThat's an interesting word for it. Tell me about that feeling of responsibility.
Lisa Cohen, Kyah Rayne FoundationI think that. It gives me direction and hope and perhaps a legacy in her honor to really make change.
Amanda Whitehouse, PhDMm-hmm.
Lisa Cohen, Kyah Rayne FoundationAnd I feel that if I don't do that, I don't know who would. And in that way, I feel responsible to maybe make a difference, and a difference with her name on it would be amazing, but making a difference in the world of food allergies and moving this needle forward and removing the barriers to food allergy education and stigma, and the accessibility and cost of medication, I hope to make a difference in, in moving that needle forward.
Amanda Whitehouse, PhDI think from what I know about your work, you already are. So why don't you dive in? Maybe you can start with what's your biggest accomplishment so far?
Lisa Cohen, Kyah Rayne FoundationThat's right. We were incorporated in 2019, but having a, a lack of sort of focus with so many things that need to be done in this area, uh, we picked the area of education. So we provide free food allergy training and certification to essentially all public entities. We specialize with a program called Kyah's EpiCourse. Uh, a little play words there, epi and course. So course for schools and kaya's epic course for food service. There are in fact laws are in place to have stock medication programs in schools with proper and certified programs and also in restaurants. These programs, which were not online programs. They're for the most part not free programs. So that was really important to us, that sort of taking what laws were in place the sort of lowest hanging fruit and be able to piggyback on that to make these programs was where we started with the foundation. So we have these free online courses that I'm really, really proud of. Of course they're free to the user, we're always looking for partnerships and collaborations and donors to keep this work ongoing. It's been really incredible to have this hands-on training with training people on using EAI trainers and practicing and building confidence and educating people on good Samaritan laws and how to step in and step up in an emergency. All of those things are really important to saving lives.
Amanda Whitehouse, PhDAbsolutely. I mean, if we don't have the information first and foremost, we can't prevent or respond to emergencies, so it's such a foundational step. I'm curious, in the process of developing that, what did you learn or what do you think needs to be done as far as better educating people through these programs? What don't people know? What information do we really need to keep getting out there as far as being epi prepared.
Lisa Cohen, Kyah Rayne FoundationYes. Training empowers schools and hospitality staff to understand food allergies and not just dietary preferences, but serious medical condition and certification gives them the knowledge and the confidence to communicate clearly, to prevent cross contact, to respond quickly in an emergency. And confidence translates into trust. We're hoping with the training that you will be prepared and not scared. Food allergies, it's an epidemic. We have a food allergy epidemic and with training and preparedness, i think that's a really, really important step. And of course, there's one remedy, one remedy for anaphylaxis, and that remedy is epinephrine. Fortunately, we're able to tackle this in some new and innovative ways with not just needle options, but no needle options. And that's really exciting. And again, removing barriers along the way to get people involved, enrolled, knowing what to do and doing it.
Amanda Whitehouse, PhDMm-hmm. Yeah. And you mentioned the needle free options, I think touches on one of the big fears. Needles, obviously that's one of the barriers to epinephrine carrying and use. What else do you think are still the primary fears and the myths that you wanted to touch on and that you want to keep breaking down?
Lisa Cohen, Kyah Rayne FoundationThat's a great question. Well, a common myth is just a small amount of a food, of an allergen, of an exposure won't hurt. But for many, even a trace exposure can be life threatening. Another is assuming allergies are just a childhood issue.
Amanda Whitehouse, PhDRight.
Lisa Cohen, Kyah Rayne FoundationWhen in reality, food allergies affect all ages and reactions can be severe even if someone has only had a mild symptom in the past. think those are really common things that people don't realize and are not really aware of. And also just the, the safety of an EAI. We have a saying in KRF and in our training, Epi first, epi fast. This is a really, really safe medication and you need to give it. And I can tell you in an emergency, you will give it, you'll give it over and over again. We teach people how to use an EAI. There's different autoinjectors out there. And now of course we have the needle free option with Neffy as a nasal option. It's exciting to have that. So we sort of debunk the myth of how big the needle is, how to look at an epinephrine autoinjector and see if it's safe to use, even an expired pen might be the only thing available and what that might look like to use it. It's a biphasic can be biphasic and the delivery of more, or another injection, the safety of that, a lot of people are waiting much too long, to use this medication. I don't know how the FAA managed to get through some of this legislation to be flying in a, in a silver tube across the, the skies and serving peanuts in the air and not having an EAI available. It's just crazy again, the barriers that we are up against. We are moving this needle forward with the incredible work of so many organizations and foundations and research and this advocacy that you're doing right now. So thank you so much for this platform to be able to talk about these things.
Amanda Whitehouse, PhDOf course we have to create and continue the conversations, right? I mean, a lot of what you must do is probably stuff that people have heard before, but it doesn't sink in always the first time. Some of that takes repetition and us having experiences and learning from other people's experiences and continuing these conversations. Not just, I teach you once and now you move forward and apply all of that knowledge immediately.
Lisa Cohen, Kyah Rayne FoundationRight. Well, you are welcome to our video library. This could be in schools and PTAs and just what is involved and how easy it is. As I said, epinephrine is safe. It's effective, it's easy to use. It's the first line of treatment for anaphylaxis.
Amanda Whitehouse, PhDWhy don't you give everybody the website? If there are social media channels they want you to follow, if they want access, if they wanna make donations and support the cause, tell them where they can find you please.
Lisa Cohen, Kyah Rayne FoundationSure. Thank you. It's Kyah Rayne foundation.org. It's spelled K-Y-A-H-R-A-Y-N-E kyra foundation.org.
Amanda Whitehouse, PhDI love her name by the way. Do you like to talk about her name and how you chose it? Do you wanna share that?
Lisa Cohen, Kyah Rayne FoundationKyah was born on the spring solstice. She was born on St. Patrick's Day, March 17th, and I always wanted her name, her her name to be Rayne, or it's a Hindi name which is Rani actually, and Rani means queen. My partner at the time, her dad, didn't want rain to be her first name or Rayne, so we came up with, Kyah or Haya. It means to life in Hebrew, and many other languages, this sort of spring and green and life. So. Um, Kyah Rayne was born.
Amanda Whitehouse, PhDIt is beautiful. I love it. Thank you for sharing that
Lisa Cohen, Kyah Rayne FoundationThank you.
Amanda Whitehouse, PhDwhile I'm, I'm on that note. Obviously this is a deeply personal cause for you, but it's a lot of professional, logistical actions that you're doing building an organization like this. How do you balance that? What's it like being in a role like that as a parent in your shoes?
Lisa Cohen, Kyah Rayne FoundationIt's really hard.
Amanda Whitehouse, PhDMm-hmm.
Lisa Cohen, Kyah Rayne Foundationhard. Yeah. I'm not sure that I'm very good at it. There's a lot of arms that make the foundation go and I feel very, as I said, responsible and proud to hopefully make a difference in this food allergy space. Having lost girl to anaphylaxis, I have this really profound and sad story, and it gives me an audience in a way, and this gravity of doing this work. And I, I feel really, hmm, almost honored and honoring her in a way that we'd been able to make some really, really significant changes both with advocacy, education, being able to influence some legislative and policy initiatives that make a difference and make it easier. And I really feel that. I want to be able to do that. When I lost Kyah, I really felt like I had lost everything, including the will to live and I bleed every day. I'm like 50% happy and 50% sad all at the same time, and this work, part of what I call, you know, my point of light or my, my Happiness formula. Doing this work for KRF helps me move through the, the pain so that I've transformed it and I don't transmit it, and that's what I hope to do. Um, and it has, it has worked really pretty well for me date. So I, I think our, our accomplishments and successes really keep the ball moving and I'm really proud to stand with so many others, so many other parents, sisters, brothers, families, that are doing this work with me. And I hope that we can do it together. And I hope that the free education pieces that we have out there will be used in these other ways with these other associations and platforms so that we can get this, this education piece out there. And we've done that and we've done it really, really well. It's a very quick and easy course. It's interactive, it's fun. It outlines lots of different scenarios and how to react in those scenarios. And by fun, I mean it's, it's not a really tedious program. This is a very serious condition, and I think that everyone knows that from my story and where I come from, but to make it a little less daunting and as I said, removing the barriers to get educated. It's very easily implementable. We started the platform in Arizona where there was 2% inclusion in the stock medication program. Emergency medication program, it's in every state, and now Arizona is at almost 50%. So we're very proud, as I said, of these accomplishments and hope that we can do this in all the states. The program is there and you can use it.
Amanda Whitehouse, PhDThat would be great. Yeah. I'm curious if there have been specific stories, specific specific feedback that you have gotten from people about how the work you're doing or Kyah Rayne's story has, has impacted them. Do you get to hear bits and pieces like that from people?
Lisa Cohen, Kyah Rayne FoundationYes, we really do. One that comes to mind is the training actually goes through an infographic on how to use the EAI and what to look for. And there was a rural school in Arizona and a child had ingested an allergen and went into anaphylaxis, and the only pen that they had on campus was an expired EAI.
Amanda Whitehouse, PhDHmm.
Lisa Cohen, Kyah Rayne FoundationThey used this EAI, knowing that they had followed some important steps, like not seeing the liquid in the pen be brown. There wasn't, floating particles, et cetera. It's what they had and it's what they used and they saved this child's life.
Amanda Whitehouse, PhDWow.
Lisa Cohen, Kyah Rayne FoundationAnd we, we get amazing stories all the time. It's been really profound to see the kind of data that we've been able to get with the expansion of these programs and inclusion of these programs in hotels and sports arenas and summer camps, and of course schools and the stories keep flooding in. We post lots of amazing information and educational information on inkedIn and Kyah Rayne Foundation social media, so join us there.
Amanda Whitehouse, PhDYes, please, everybody. And I do, I think people do wanna follow you. They wanna join with you and they want to be part of the change. I think we all want change and, and you have such a powerful voice in that conversation. That's just so important. It's so crucial.
Lisa Cohen, Kyah Rayne FoundationThank you. I do agree with you. I think people have a, a sense of responsibility and humanity as I do. And they want to do good and they want to be good. And we have another saying KRF and that's, you know, step in and step up and everybody can do that. Even just going to your school and saying, you know, there's free education out there. Does our school have an EpiPen on campus and where is it? You know, get trained. So it's really exciting to see the changes that we're making and the expansion of the programming and we just keep it going as best we can. So thank you for this opportunity and this platform to share. I appreciate you and I know there are so many parents and families that are doing this work better than I'm doing, and I just hope to give, people a tool to be able to use and make a difference so it's out there.
Amanda Whitehouse, PhDWell, it's, it's teamwork, right? Everybody covering different aspects. There's a lot of holes that we have to plug here. So if, if everyone teams up I think that's the way that it has to get done.
Lisa Cohen, Kyah Rayne FoundationAs I said, I am just a cog in the wheel. I have a very traumatic and sad and personal story, and I will keep telling it to make a difference, in a, hopefully a very big way and dramatic way that we can make changes from what I call the top down. And policy really is the top down. The other things that we do are kind of more grassroots and getting it out there through schools and PTAs and camps and all of that. But if we can change this from the top down, like making food allergy training mandatory, that will make a huge difference. Then everybody can be trained and everybody can know what to do.
Amanda Whitehouse, PhDAbsolutely.
Lisa Cohen, Kyah Rayne FoundationShe would be 28 almost. 28 years ago, the way to deal with food allergies was avoid, avoid, avoid.
Amanda Whitehouse, PhDMm-hmm.
Lisa Cohen, Kyah Rayne Foundationa very long way from that. There are so many options. There are so many alternatives. I remember Kaya wanting to go off to camp. To send her off was so complicated. And now there's one or two grocery aisles in every store that have all kinds of options. Going to a pizza parlor and getting cauliflower crust, these things did not happen. So in fact, there have been incredible strides and awareness and it's important and progressive. For Kaya when she was in school, aside from the avoidance and that kind of mentality, it was sort of like, don't send me with my own special lunch, I won't eat anything. I won't share anything. I won't have somebody's cookie. Don't tell them that I'm allergic. I wanna go to the birthday party. Those kinds of things are the stigmas that I think food allergy kids have, being different, it being a disability.
Amanda Whitehouse, PhDI agree, and I think you're touching on both sides of it, that it is important to celebrate how far we've come and to recognize and acknowledge how many choices and options and, and steps toward being safer we have now, and that it is still an epidemic. It is a disability that affects every aspect of people's lives, and we can't just dismiss it.
Lisa Cohen, Kyah Rayne FoundationAlso, epinephrine costs pennies, so shame on these, you know, big pharma and PBMs for this price gouging of life-saving epinephrine,
Amanda Whitehouse, PhDMm-hmm.
Lisa Cohen, Kyah Rayne Foundationcare. You could put that in there too and put my voice on it. I don't mind. Epinephrine in schools is, I think $10 is the law in Canada and epinephrine is pennies. It is just absolutely criminal that this medication is not accessible, available, and affordable the people that need it. Wherever there is food, there are food allergies, and the first line of defense is and we need to have it. So thank you for getting the word out and hopefully banging a very big drum
Amanda Whitehouse, PhDYes.
Lisa Cohen, Kyah Rayne Foundationa difference in this way.
Amanda Whitehouse, PhDYeah, thank you for saying it, and I have no problem. We've said it on my show. We say it often but I, you know, I'm a big proponent of the epi price cap acts, in New York, ours was passed. It's one of the things I told you before we started, I'm so emotional and I get choked up every time I think of a family or a parent out there with a child with allergies that, that cannot access it, that doesn't have access to it. It's just horrible to me.
Lisa Cohen, Kyah Rayne Foundationagree. Well, that's part of, just to go back to Kyah's EpiCourse for schools, you know. A lot of these low income and rural areas and all kinds of other diverse populations, they can't afford to have an EpiPen. They count on the school to have a stock epi at school. And uh, I plan on continuing this work to get schools trained and certified so that they adhere to their stock medication programs, emergency medication programs, so that epinephrine is available to these particular populations. It's important.
Amanda Whitehouse, PhDIt's so important. Thank you for doing that. What are other things that you see for the future of the Kyah Rayne Foundation?
Lisa Cohen, Kyah Rayne FoundationI, hope that her name keeps ringing out. That's what I hope, because I will never can never forget her, and everyone that knew her feels the same. I think she would be really proud to know that she is a lifesaver has made a difference even with her short time on this planet.
Amanda Whitehouse, PhDAbsolutely. it's such a beautiful legacy and now that those of us who didn't even get to know her, but know her story and have heard you talk about her and everything that you're doing in her memory and in her honor, we won't forget her name either.
Lisa Cohen, Kyah Rayne FoundationYes.
Amanda Whitehouse, PhDIt takes so much courage and grace and honesty from you to do all of those things in the way that you approach it. And so I just wanna say again, on behalf of all of the food allergy community, thank you for doing what you do and turning your pain into something that protects my son and all the kids everywhere. Adults too, but especially, you know, these young people that need us to, to make changes for them, to keep them safer.
Lisa Cohen, Kyah Rayne FoundationThank you. I really feel like it's something I have to do and I'm, I'm really glad that it made a difference and I appreciate the acknowledgement. couldn't do it with so many others. I don't know how to do more. I just, I'm trying to do even more. I'm appreciative for, for your time and expertise and network and your openness and willingness to have me. So it's, it's an honor.
Amanda Whitehouse, PhDWell, thank you. It's an honor to have you. I appreciate it so much. As we close today's episode, I want to acknowledge the weight of this conversation and also the clarity that it brings us. Kyah's story is heartbreaking and it's a reminder that education, access, and action matter. Here are three ways you can honor Kyah and take what you learned today into the world. Number one, refresh your epinephrine knowledge. Make sure you carry your epinephrine at all times. If you are not, sit down and come up with a plan for making it easier and more convenient to carry and to remember. Make sure you know when and how to use your epinephrine and help normalize its use by talking about it openly with caregivers, teachers, coaches, friends, and family members. Number two, of course, support and follow the Kyah Rayne Foundation. Lisa's work is creating real change through education and advocacy. If you're able to donate and also following, sharing, and supporting the foundation helps to extend Kyah's legacy and reach more communities. Number three. Be the person who speaks up in everyday spaces, whether it's advocating for epinephrine access in schools and public spaces, correcting misinformation when you hear it, or ensuring others feel empowered to act in emergency, your voice matters. Thank you for listening, for learning together, and for helping to create a world that is safer for everyone with food allergies. 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.
