(uptempo music) (uptempo music continues) - Food allergies affect 33 million Americans.

6 million of those are children, but allergies aren't just inconvenient, they can be deadly, especially for children and those who are undiagnosed.

Lindsey Spangler is a nurse practitioner and she is the new Executive Director of Red Sneakers for Oakley, and she is working to raise awareness about food allergies.

Thanks for coming in.

- Thank you.

- Congratulations on the new position.

- Thank you so much.

- We know that you're a co-founder of the Peoria chapter, but before we get into the specifics on food allergies, let's talk about Red Sneakers for Oakley and how that organization came about and who it's named for.

- So, Red Sneakers for Oakley, they are a global non-profit for food allergy awareness and really was founded because of Oakley, who was 11 years old, who tragically died of severe anaphylaxis.

At that time, his family did not carry epinephrine.

They weren't really educated on the need to carry epinephrine, and he did go into severe anaphylaxis.

His family called 911 and his first responders did not carry epinephrine as well, and he tragically passed away.

And because of that, his family, of course, and other families never want another tragedy to happen due to food allergies.

So, Oakley loved his red sneakers, so they really used that symbol of the red sneaker to really make a global impact on food allergy awareness so no other tragedy happens again.

- And when that happened, I mean, he didn't pass away right away.

I mean, it was kind of a drawn out thing.

You know, we see things in movies and TV, people have an allergy and they turn red or whatever, but this was a lot different.

- So yes, usually when anaphylaxis happens, people have that quick emergency response, that hives, trouble breathing, trouble swelling.

He did have a delayed anaphylactic reaction, which is not truly common.

And so when that happened, again, his family just thought, let's give Benadryl, he'll be fine.

But really he quickly, after a few hours, developed that severe anaphylaxis again, that delayed response, where he needed that lifesaving medication epinephrine.

- Did they even know prior to this that he had food allergies?

- Yep, they did know he had food allergies but a lot of people unfortunately, are educated that they may have just had a mild reaction.

Right, they never had severe anaphylaxis, but maybe they developed hives one time from a food allergy.

There's no mild food allergy.

If we have a food allergy, we always need to carry epinephrine.

So they just weren't really educated at that time.

- We're gonna talk about the specifics of epinephrine, how that works and everything else, but tell us how you got involved in this.

- So I got involved when my daughter was approximately eight, nine months old.

She developed her first anaphylactic episode.

And at that point we did have epinephrine, we did administer it.

We went to the emergency room and that's when we really found out this is life-threatening.

This is gonna be a lifelong process for our family.

And when you don't have food allergies in your household, it doesn't affect you like other food allergy families do, right?

So our whole process of living life changed.

And when that happened, we said, you know, there's not a lot of support in the area for food allergy families, right?

Like, we need other people around the area.

Like what did you do when you went to school?

What did you do on vacation?

We needed that support.

So myself and another family, Chris Horan, who his child has food allergies, we came together to start a support group.

And this was about three, four years ago.

Once we started that support group, we realized there was so much more that needed to happen in the area regarding food allergies and education.

So we wanted to start a nonprofit.

And when we started that process, we said, why recreate the wheel, right?

Why reinvent this when Red Sneakers for Oakley is doing everything we wanna do, but on a bigger level?

And so we reached out to them and said, "How about we be your first chapter?"

And that's kind of the process on how it started.

- Okay.

How do people find out that they have a food allergy or their children do?

I mean, is it always the hard way?

Is it a reaction or is there a test you can take early on to find out maybe if your child has an allergy?

- So best recommendation is, unfortunately, if your child reacts to that food.

No blood test or skin test is really the best type of treatment or diagnosis.

It's really ingestion of the food.

You ingest the food, you develop hives.

Truly that first reaction is usually not the most severe, but it could be.

So, anytime your child has any sort of reaction, we're treating it, going to the emergency room if it's severe, and then you're following up with your primary care doctor or an allergist.

- Okay.

I'm curious, you being a nurse practitioner, did you know a lot about food allergies or did you suddenly become an expert when you needed to?

- Well, I'm an, I guess never an expert, right?

We're always learning.

But in urgent care, I do work in urgent care as a nurse practitioner, and we see and treat anaphylaxis, unfortunately, all the time.

Really a person reacts, they don't go to the emergency room, they come to urgent care.

So, I do see and treat anaphylaxis a lot in the medical field with nurses around, with the medication, right?

But when it's in your household and it's you by yourself with your child or your spouse, it's different, right?

You're a mom at that point.

Yes, I'm educated and I treat it, but when it's your own child, you know, it's a little bit different.

So yes, I was somewhat of an expert, but not truly in the medical side, but it was new as an allergy mom.

- Well, speaking of new, I mean, I've seen some amazing statistics here.

Pediatric hospitalizations for food allergies tripled between late 1990s and mid 2000s.

I mean, a hundred years ago when I was a kid, I don't remember anyone having food allergies.

And now it seems like it's extremely common.

I mean, is it something that's just... Are we seeing more of it or are we diagnosing it more?

What's going on?

- Well, unfortunately I don't think we're diagnosing it more.

I think we're seeing it more, right?

It's a 50% increase from, you know, like you said, 2011, I would say and those statistics were 10 plus years ago, so I'm sure it's even more.

One to two kids in every classroom now have a severe food allergy.

We don't know the true reason, right, but a lot of studies are going on if it's due to our gut health, is it due to the chemicals in our food?

We don't truly know yet.

But a lot of good studies are being done right now so hopefully at some point we can get more of an answer.

But until then, we just need to be better educated.

We need to make sure that our children, other adults, places now have the lifesaving medication because you can know what to do in an emergency, but if you don't have the medicine, unfortunately that child or person is going to die.

So, we need to make sure all places are equipped with epinephrine.

- Yeah, we're gonna talk about some of the great things you've done here locally about teaching people and epinephrine and things like that.

Now, what is the difference between a food allergy and a food intolerance?

- Big difference.

So one is life or death, right?

Food intolerance is, say a milk lactose intolerant versus a food allergy.

This is your immune system's response to this allergen that can cause a life or death reaction, okay?

Food intolerances do not need epinephrine.

These are not life or death.

That person may feel bad when they eat it.

They may have some gas, some bloating, but they're never going to have a life or death reaction.

So food allergies are very different than food intolerances and unfortunately that word gets interchanged a lot.

- Sure.

So after your daughter was diagnosed and you start doing your homework, what did you learn about the availability of epinephrine in our area and who has it and who doesn't, and what did you find?

- Well, one, my daughter is severely anaphylactic to mustard seed, which is not a top nine allergen here in the US.

So that part was a huge step for our family because it's hidden under the word spices or natural flavors.

So living in a world where your allergen is outside of labeling laws in the US was hard, right?

Because one, you have to either get out everything that says spices in your house, or you have to call the company to make sure it doesn't contain mustard, right?

So, you're living in a different world of reading labels and figuring out what food is safe or not.

And then yes, trying to figure out who has epinephrine.

Nobody has epinephrine in any entity.

The only people that carry it are prescribed to patients.

Right?

- Okay.

- And maybe your first responders, but most likely not.

So really you are in charge of, you know, the epinephrine and making sure it's with you at all times.

- Sure.

I mean, we've seen in the last decade or so, a lot of defibrillators put in schools and public places and things like that.

Is that something that you would like to see done having epinephrine and things like that more in public places ready to go?

- Yeah, so any place there's an AED there should be epinephrine, right?

Because if there's a severe anaphylactic reaction and it goes to a cardiac arrest, then we need to use the AED, right?

So any place there is the AED, epinephrine should be right there.

And yes, any entity should be carrying epinephrine.

People out in the world they don't know that epinephrine can be available in restaurants, in venues, in stadiums until we go and educate them to say, this is your law in your state.

You technically are allowed to have it.

This is how you can get it.

We'll provide the training, we'll help get the medication for you, and you can save a life if this ever happens.

- Is this something you have to have a prescription for?

- Correct.

- Okay.

- Yep.

- So how would that work, say if, the Civic Center, for example, wanted to have some on hand, what do they need to do to get that?

- Well, one, they're already equipped with it.

- Oh, great.

- Yep.

So we already donated the medication.

I trained all the Civic Center staff, so they are all trained for food allergies, how to use epinephrine.

They've practiced, they are equipped in case of an emergency.

But basically if they did not, they would reach out to us and we would set up a meeting, discuss the laws, discuss how we can get this in your entity venue, and we schedule the trainings and donate the medication.

- And you've worked with the Peoria Chiefs too, is that correct?

- Yep, the Peoria Chiefs are really the first baseball stadium in the US to carry undesignated epinephrine.

- Starting small, work your way up.

- I know, you have to.

You know, allergy families don't go to places like this because the risk is too high, right?

So they avoid it.

And so we really need to think about inclusion, all families, and how do we do it safer, right?

- So if a family, and we're not just talking about kids, but adults too, if they have a severe food allergy, what is it like if you wanna go out to eat somewhere, what do you have to do?

What do you have to avoid?

Is it one of those things where it's like, it's not even worth the trouble of going out?

- Yeah, well, it really depends, right?

Like what is your risk?

Like what do you want to risk going?

Usually the steps are you go online, you check that restaurant, you check their menu.

Some restaurants are great with labeling allergens.

A lot of restaurants are not.

So, we're working with other companies to help with the labeling at menus, on menus at restaurants.

But you look on the menu, on the website, you call and you say, "You know, I do have a food allergy.

I was looking at your menu, this specific food, does it contain X, Y, and Z?"

Whatever your allergens are.

And you see if they're one receptive of disclosing what the allergens are, you know, if there's any hesitancy, usually you go to another restaurant.

But really calling ahead and preparing because food allergy families don't just walk into a restaurant and they've never seen before.

Usually we like to be prepared and call ahead.

- Understood.

Let's talk a little bit about the epinephrine here and tell us a little bit about how that works.

- So we have three different devices, all with epinephrine in it.

Again, epinephrine is the only medication to save a life, okay?

We don't give Benadryl, Zyrtec for severe anaphylaxis.

Epinephrine is the only thing that's gonna reverse it.

This autoinjector is one that most people are probably used to seeing, okay?

These are trainers, just so we're not scared, but the blue cap and the orange would be the needle.

Okay?

- Okay.

- You always wanna grip it like this, just in case you don't wanna put your thumb on any end.

Blue cap comes off, orange would go to the thigh.

So if you have an autoinjector like this, you think of the song blue to the sky, orange to the thigh, and you would inject it, (autoinjector clicks) push down, at least count to three, three to 10 seconds and hold it into the thigh, okay?

And release.

It'll go through clothes, okay?

So you don't have to worry about jeans, sweatpants, the needle will go straight into the thigh, okay?

So blue to the sky, orange to the thigh.

- It seems pretty easy.

- Very easy.

How or how soon do you start seeing the effects of it?

- Oh, very quick.

So the person usually, if you're giving this medication, they already have lips swelling, full body hives, trouble breathing, this is the time you wanna use it.

Can you use it sooner?

Absolutely.

That is the time, they're gonna get relief within seconds.

- [Mark] Okay, now if if you're noticing someone having an issue, what do you do first?

Call 911 or use that?

- Medication first.

Okay, epi first, epi fast, then call 911.

Because when it comes to anaphylaxis, time matters, okay?

It could be the difference between life and death.

So, if we're concerned, epi first, if someone else is there, they could be calling 911 at the same time, right?

If it's just the two of you, epi first, got that medicine in, then you're calling 911, okay?

And usually people, usually, they should be carrying two at every time, two at all times.

Because if we administer the medication the first time, in five to 10 minutes, if their symptoms are not improving or they're worsening, you take the other epinephrine, inject it into the other thigh.

- Okay.

- Okay?

Because you're calling 911, but again, your first responders may not even carry epinephrine.

So you have the other medicine, you're administering it again.

- Interesting.

So, why do you need a prescription for this?

- Because it's a medication and it's due to somebody's diagnosis.

Right now there is a law, Dillon's law, that is being passed here in Illinois hopefully soon and this law allows for any person that doesn't have a food allergy to get epinephrine at a pharmacy to save somebody else's life.

So this would be huge.

Dillon did pass away from severe anaphylaxis and his parents fought for this law that was originally passed for anybody to save a life, which would be great.

- So, if someone watching this just wants to be a good Samaritan and wants to have this on hand just in case, someday, hopefully that'll be- - Yeah.

But you know, there are some people that are able to get the prescription, maybe they've had a mild reaction of some other sort and their prescriber has given them this.

Or even they had a family member that has food allergies, right?

People do carry it around just because they're like, this is the only way I can save somebody's life if someone's having a reaction.

- Sure.

- But bigger goal is to get epi everywhere.

Red Sneakers for Oakley, that is one of our big missions and campaigns.

We want epinephrine everywhere.

So God forbid this happens, we have the tools to save a life.

- And you have something else there.

It looks kind of like Narcan.

- Yep.

So this is a new device.

This is an intranasal device called Neffy.

Epinephrine is in here.

It was just approved for adults and children.

So children now and adults can get Neffy prescribed.

So it's a needleless device.

It's an intranasal, goes right into your nose, just like Narcan or Flonase, or Nasacort, right?

It's just an intranasal spray, works just like the injectors, but there's no needle.

So that hesitancy some people have because of a needle, they're scared to hurt somebody, you know, Neffy's a great tool that now they can use and it's just a nasal spray.

- And with the EpiPen, I mean we're not talking about a huge needle.

- Nope, not a huge needle.

And we have to think about this, if someone is having a reaction, they do not feel good, okay?

They're not gonna be like, "Please don't inject me."

They're like, "Please help me," right?

So, that little needle goes in, they're gonna feel so much better.

So, I think it's more of our fear when we're injecting it versus they just want help.

- So with your new position as the executive director of Red Sneakers for Oakley, what are your priorities in terms of getting the word out there and equipping people with epinephrine?

- So I have a lot of priorities, but our biggest thing is one, educating that this never happens.

One, that everyone should be carrying two epinephrine injectors, right?

If you have a food allergy, there's no mild reaction, always carry epinephrine.

That's easy, that's number one.

So let's get that out there for everybody to know.

And then two, making sure these entities are aware that they can carry them.

So, getting it into restaurants, getting it into large venues.

And then our police departments, we recently just equipped our Peoria Police Department, a hundred officers now have epinephrine.

And so, when they're the first ones at the scene, they can save a life instead of just standing there waiting.

So, getting our police departments equipped, getting epi in every entity.

I don't just have one place to go.

Yeah, I work fast and I have a great team.

- What about schools?

- So schools is absolutely needed.

Schools are allowed to have undesignated epinephrine already.

So, my goal is making sure that one, that they do, and if they don't, we can help them get the medication.

It is free, K through 12, all schools can get free undesignated epinephrine in their school.

I train them, we help prescribe the medication and they get it donated for free.

So just teaching these schools that one, do you have it already?

If not, we can help you get it.

Again, this is free.

You know, schools is a scary place for allergy families.

We help them develop better food allergy policies.

So if they reach out to us, we can really make it a safer place for all families.

- Are there any current state or federal laws that make what you're doing harder?

- Harder as in maybe like they haven't passed the laws that we wanted to.

We're working with Gio's Law based out of New York.

It now was just introduced in the House and to Congress.

Basically this law would provide grant money to police departments to carry epinephrine, which would be huge.

Gio did pass away due to severe anaphylaxis as well and his mom has been working for a long time to get this bill on the federal level.

Because for us here in Peoria, we had to raise our funds to donate a hundred, actually, we donated 200 epinephrine injectors to our police department and it was a lot of money.

But really when it comes down to it, life or death, it doesn't matter, right?

But if this law, Gio's Law, gets passed in the House, then this would provide grant money to police departments to be able to get their police department equipped.

- Looking at some of the more common food allergies and again, for those of us who haven't been around, people with food allergies, let's talk about the nine most common allergens, shellfish, milk, peanuts, we hear about more and more every day.

I guess, how deadly are these things in terms of if a child has a severe allergic reaction to peanuts, do they just have to be in the same room with a peanut?

Or does it have to touch their skin?

Do they have to ingest it?

Tell us a little bit about that.

- Everybody's reaction is different, right?

We can't really say you've had one reaction to a peanut, your next one is gonna be the same, right?

You can have a mild reaction one time, the next time you can have severe anaphylaxis and it could be just touching it, right?

They can develop severe anaphylaxis.

There are some that have that airborne reaction that is more rare.

Most of them you do have to ingest the allergen.

But when you're talking about younger kids, you know, really educating them on one, if you touch anything, don't put it in your mouth.

I think I say that to my daughter all the time.

You know, "When we're at school, do you put your hands in your mouth?

No.

How do you..." You know, wash your hands with soap and water.

But when she had her anaphylactic reactions, she had a small trace amount, touched it to her lip, and she developed severe anaphylaxis.

So, it really just needs to be a small amount of that protein and that allergen to cause a reaction.

- And how does that, especially for a child, how does that change their lives?

- Well, it changes drastically.

You know, our big thing is education.

So again, my daughter is five.

We do a lot of role play, right?

We role play in school.

You know, if a child, if your friend says, "Naomi, do you want this food?

What would you say?"

And she says, "No, thank you.

I have food allergies," right?

So role playing with them at a young age to make it kind of normal.

Like unfortunately, that's their normal life, you know?

Do we share food?

We need to read ingredients.

So, educating them at a young age.

And unfortunately for us, it's just our normal right?

People that come in our house, they wash their hands before they do anything because unfortunately, they're probably eating our child allergen, right?

So again, that small amount on somebody's hand can cause somebody a life or death reaction.

- [Mark] So you've educated yourself a lot, as I'm sure all parents with children in the situation have.

But is the general public educated enough?

- [Lindsey] I mean, I think that's our big goal as Red Sneakers for Oakley, really to educate not only food allergy families, but our big goal is everyone, the community.

Because one, they're gonna know somebody that has a food allergy.

If one to two kids in every classroom have a reaction, your friend most likely is gonna have a food allergy.

So how do you keep your friend safe?

What happens if your friend was having these symptoms?

Do you know how to use an EpiPen, right?

So educating our community is one of our biggest goals as Red Sneakers for Oakley education.

- [Mark] Besides the Peoria Police and the Civic Center and the Peoria Chiefs, what other goals have you met around the Central Illinois area that you can tell us about?

- We also equipped an early learning center.

So early learning centers here in Illinois and across the US don't carry undesignated epinephrine.

K through 12 is allowed to, but early learning centers where you have kids ages from newborns before they go to kindergarten, these are the first places where they're most likely gonna have a reaction.

And these are the places that don't have that lifesaving medication.

And most of the time, if it's their first reaction, the parents don't have epinephrine for them.

So, we have made UPC Discovery the first allergy-friendly early learning center.

They have gone through our education process.

They have great food allergy protocols in place.

They now have undesignated epinephrine.

So in case a reaction happens in their early learning center, they're ready.

Elijah's Law, based out of New York state, was passed here in Illinois mandating these early learning centers to be epinephrine-equipped and food allergy-trained.

It has passed here in Illinois, it's just not enforced.

So we're trying to kinda get ahead of the game to make more early learning centers ready in case of an emergency.

- Well, it sounds like you've got more than enough to keep you busy in your new position.

- Yeah.

- Anything else we haven't talked about that you'd like people to know about food allergies and epinephrine?

- I think the biggest thing to know is that just because a food allergy is not the top nine labeled here in the United States, somebody can have severe anaphylaxis from any food, okay?

And it could be worse the next time, right?

We never know what that reaction's gonna be.

There's no contraindications for giving epinephrine.

Some people are like, "Well, what if they have a heart condition?"

Or what happens if... You know, "Is something gonna happen if I give it?"

No contraindications for giving epinephrine.

If you're not sure, give epi, give it fast, okay?

And call 911.

Hopefully those are the big takeaways.

- And where can people find out more information?

Give us a website.

- Yep.

You can go to redsneakers.org.

That is the national organization.

Or you can find us in the Peoria Chapter.

So redsneakers.org/peoria.

You can always email me as well.

But just learn about Red Sneakers for Oakley and Oakley Debbs, who was such an amazing young child who again, no child should have to go through this.

No family should have to go through this.

So, you know, making it national that we want epi everywhere, education.

So if you have a school that you don't feel is educated enough, reach out to us.

We can help make that happen.

Or if you have a restaurant that you want equipped, reach out to us.

- All right, Lindsey Spangler with Red Sneakers for Oakley.

Thanks for everything you're doing.

I'm glad you're here doing it.

- Thank you so much.

- All right.

That is our time for right now.

Thanks for joining us.

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