The worst part is doubting it yourself. 

The overwhelming sensation of scratchiness in your throat, the sudden loss of appetite, the itchy tongue, the shallow breathing… Every time I feel it, I deny it, trying to convince myself it’s something else—something less serious than what it is, because in the moment, that’s just easier to process.

But it’s difficult, and incredibly dangerous, to deny a life-threatening experience. 

Since time is of the absolute essence during anaphylaxis—a severe form of an allergic reaction that is mainly caused by foods, medicines, and insect stings—it is crucial that it is recognized and handled as quickly as possible.

In food-induced anaphylaxis, once an allergen, or substance that causes an allergic reaction, enters the body, the immune system mistakenly reads even the tiniest amount of the offending food as a threat and overreacts. This overreaction then sets off a chain of physical events. It is often misunderstood by both patients and health care providers because each reaction can differ slightly depending on the protein ingested, how much of it, or what state of health you are in at the moment of exposure. For example, some people have more severe reactions after exercising or fighting a virus. These individual differences, along with the panic and denial that often sets in, complicate immediate treatment decisions and waste critical time. 

I am allergic to nuts. I never go anywhere without my epinephrine auto injector, and I scrutinize every bite of food as though I may die within the next ten minutes, because I can. My friends sometimes think I’m being too careful and maybe even a bit dramatic. At the same time, however, they marvel at the severity of the situation with some disbelief. “Do you ever just think about how crazy it is?” they ask. “A single nut could kill you.” 

They’re right. It’s hard to believe, but the answer is yes. I do think about anaphylaxis every day and it terrifies me more than I like to admit (even to myself). After experiencing several anaphylactic reactions, I have unfortunately come to realize how very real it is. That’s why I spend so much time checking labels, making sure my epinephrine auto injector is in my pocket before I eat, and asking waiters—sometimes even three times—to make sure my food is safe. 

Despite being “too careful,” I understand that there are variables out of my control. Trust me, I would do anything to avoid the horrible symptoms, such as vomiting, extreme anxiety, and a strong sense of impending doom that so many of my peers without life-threatening food allergies can’t possibly understand, but I don’t, and never will, have x-ray vision.

It wasn’t until this past March, as I stood gasping for breath while plunging my Auvi-Q (a newer brand of epinephrine auto injector) into my thigh, that the reality hit me: this could have been it. All because of a stupid nut—a supposed pine nut—that somehow made it onto my dinner table, despite my best efforts. 

While I wish my reaction never happened, in many ways, I am thankful it did. One, it forced me to practice administering epinephrine on my own before heading off to college. And two, the differences in my emergency experiences opened my eyes to some potential confusion about treatment objectives and forced me to delve deeper. I have learned that anaphylaxis is often a subjective diagnosis, and that epinephrine is often underutilized by both patients and medical professionals. This is an opportunity to bring about important change through beneficial education and awareness on all levels: for patients, community members, and health care providers.

That night, sitting in the back of the ambulance on my way to Norwalk Hospital, I remember being surprised (and concerned) that the Emergency Medical Technician (EMT) did not recognize the epinephrine auto-injector in my hand. I quickly educated her about the Auvi-Q and described my symptoms, to which she was very appreciative. 

Later, I arrived at the Norwalk Hospital Emergency Department. After some confusion and debate, the EMTs, nurse, and doctor ultimately decided to treat me with IV steroids and an inhaler, despite a growing case of new welts and hives and a second wave of difficulty breathing. I had always been told to inject more epinephrine if my reaction seemed to start again within 10-20 minutes, but it was hard to speak up in my current condition. While I was worried, I was curious at the same time: How could anaphylaxis, a condition that sends someone to the emergency room every three minutes, prompt so many questions for all of us in that room? How should decisions about treatment be made by patients and doctors in these critical moments after a reaction?  How are medical professionals trained to handle anaphylaxis? Is it ongoing and consistent? And what role does epinephrine play in anaphylaxis treatment as compared to other types of medication?  

I soon found out I wasn’t the only one asking these questions. Jessie Adams, a mom in my own town, had also experienced inconsistency when it came to her son’s anaphylaxis treatment. The first time he ate a nut, she was told she had done the wrong thing by not administering epinephrine prior to calling 911. The second time he had a reaction, she did what she was instructed to do the first time, but was later informed by the EMT that she “had jumped the gun a little.” This contradictory information immediately led to confusion, causing Adams to fear for others dealing with food allergies, who rely heavily on medical personnel to tell them what to do.

This inconsistency also takes place outside of Fairfield County. Sarah Krahenbuhl, a mom living in Phoenix, Arizona, had a similar experience. After ingesting milk, her son went into anaphylaxis. Instead of receiving epinephrine from the first responders in the ambulance, she was told that her son solely needed Benadryl. Later at the hospital, she was informed that her son should have, in fact, been given epinephrine. Now, Krahenbuhl works hard to ensure first responders are properly educated in her community by holding an annual pediatric Symposium. 

These testimonials made me realize that first-hand experiences could be instrumental in educating everyone to ensure greater consistency in identifying the symptoms of anaphylaxis and its best treatment course.

That’s when I decided I needed to go straight to the source. I reached out to Norwalk Hospital emergency medicine physician Brian McGovern, who kindly took the time to meet with me and really discuss the issue. He admitted that “epinephrine isn’t given nearly enough” due to a variety of reasons. 

Epinephrine is another name for adrenaline, which is a commonly known hormone already produced by the human body. In an allergic reaction, epinephrine is injected to reduce rash/skin swelling, open constricted airways, and increase blood pressure and heart rate: all of which are affected during anaphylaxis. 

Part of the stigma surrounding epinephrine is that its use in the hospital setting is reserved for very sick patients. It is used for patients experiencing anaphylaxis, severe shortness of breath, critically low blood pressure, and even cardiac arrest. According to Dr. McGovern, there exists a “mystique around epinephrine being this crazy, strong life saving medicine,” meaning some misinterpret it as being too powerful and capable of causing a dangerous outcome. Dr. McGovern believes that this should be dispelled when treating anaphylaxis.

The symptoms of anaphylaxis can also be tricky. The objective symptoms – those seen through observation – that a patient may experience include shortness of breath, loss of consciousness, hives, and swollen lips, whereas subjective symptoms – those you cannot see through observation – include itchy tongue, closing throat, dizziness, nausea, and stomach pain. 

One can also experience a delayed set of similar symptoms after initial treatment, which can either be a continuation of the initial reaction or a “biphasic reaction.” The difference between the two is that a biphasic reaction, otherwise known as a rebound reaction, typically occurs 1 to 48 hours after a reaction is completely gone with no continued allergen exposure, whereas a continuation of a reaction is where the initial symptoms aren’t completely treated. In every anaphylactic reaction I have personally had, I have experienced one of the two. When I was five years old, for instance, after accidentally ingesting a walnut, I remember being given one dose of epinephrine by my mom at home and a second dose of epinephrine in the ambulance by the EMT on the way to the hospital due to the first injection wearing off. This is the advisable step to take to ensure symptoms are properly treated.

However, since many of these symptoms are not clearly visible, medical professionals may hesitate to officially diagnose a patient with anaphylaxis or fail to recognize a rebound reaction in time. Therefore, Dr. McGovern emphasizes that communication between patients and health care providers is of paramount importance. Verbalizing current symptoms, the interventions already taken, and previous similar episodes is of great assistance. However, this poses another important question. Isn’t it possible that this could be a problem for individuals having first-time allergic reactions, or for those who are unable to speak because they can’t breathe?

“There is a whole spectrum in between, and we don’t know where this meter is going to fall. So that’s where it becomes a subjective issue,” McGovern said. 

To get more information about the current state of EMT training and epinephrine use, Dr. McGovern recommended I speak to two other important members of the medical field: Wilton Volunteer Ambulance Corps (WVAC) Secretary and Field Training Officer Elana Everett and Norwalk Hospital Emergency Medical Services (EMS) Director Aaron Katz.

Everett, as the head of EMT training in Wilton, knows a lot about the present curriculum and protocols.

“While there is a National Registry of EMTs that creates guidelines, it is up to each individual State Department of Public Health, Office of Emergency Medical Services to create the protocol,” Everett said.

 In Connecticut specifically, EMTs are only allowed to give oxygen and epinephrine to patients, whereas paramedics—individuals who have more training than EMTs—are also allowed to administer steroids and diphenhydramine (Benadryl). 

Like Dr. McGovern, Everett made it clear that epinephrine is by far the most important. 

“There has even been more of a push in recent years to give epinephrine whenever anaphylaxis is suspected,” Everett said. “It should be the first medication administered.”

In fact, the Connecticut Statewide Emergency Medical Services Protocols explicitly states that “in anaphylaxis, epinephrine should not be delayed by taking the time to administer second-line medications such as diphenhydramine.”

 The only time steroids and antihistamines (which include diphenhydramine) should be administered, according to Everett, is when there is “significant respiratory compromise” after already receiving epinephrine. 

Since responders treat patients based on each individual symptom they observe, the treatment process can vary, which is why Everett pointed out that “besides giving epinephrine, there really is no one ‘right’ way to treat anaphylaxis… every case is different.” 

Katz agrees with Everett, adding that steroids are not a first line drug. 

“Corticosteroids take time to build up in the body with a longer onset duration,” Katz said. 

They take effect much slower than epinephrine, which acts immediately. However, they do play an important role in the overall treatment. Because of this, and the fact that many doubt the ability of steroids to help at all during an allergic reaction, Katz considers their role in treating anaphylaxis “controversial.” 

“In the EMS world, the concern is that paramedics might waste time trying to give steroids when they really need to be giving more epinephrine,” Katz said.

Dr. McGovern, like Everett and Katz, made an extremely important point when he made it clear that epinephrine should always be the first treatment for anaphylaxis. He explains that there is always a risk and reward thought process in administering any medication. The benefits of administering epinephrine far outweigh any potentially dangerous side effect in practically every patient, especially a young healthy patient. 

“This should be our choice of medications that we give: numbers 1, 2, and 3 should be epinephrine, and number 4 equally will be antihistamine and a steroid,” McGovern said. “That’s how important epinephrine is… it is unbelievably safe and needs to be used more often.”

Dr. Tom Casale, the consulting Physician for FARE (Food Allergy Research and Education) concurs. He stresses how important it is that epinephrine is given every 5 to 10 minutes, especially when a patient deteriorates.

“There is no good evidence that steroids help prevent biphasic reactions or recurrence of anaphylaxis,” Casale said. 

And while it’s a given that epinephrine is a life-saving intervention, most people who are not in healthcare don’t know how important this medication can be in an anaphylaxis emergency. They don’t know what symptoms call for it or when to use it, and many wouldn’t even recognize or know how to operate one.

In my own life, I’ve noticed how big of a problem this is. Just the other day, for example, I asked one of my close friends if she would be okay administering epinephrine to me in the event of an allergic reaction:

“Of course, I would give you epinephrine,” she said. “If only I knew how to use an auto injector.”

That same day, I sat in my health class listening to my teacher describe heart attacks and cardiac arrest. He went into detail teaching us CPR and how to use an AED in case of an emergency. It dawned on me that anaphylaxis was an “emergency,” so why aren’t severe food allergies included in the curriculum and why don’t we all learn how to use an auto injector such as an Epi-pen or Auvi-Q in class?  

Katz and Dr. McGovern believe it to be a numbers game.

“From a public health perspective, cardiovascular disease is a significantly larger public health problem and kills many more people in the U.S. every year than anaphylaxis,” Katz said.

And Dr. McGovern finds the following. 

“The number of deaths from food allergy anaphylaxis are approximately 100 per year in the US,” McGovern. “Here’s the competition. There are about 450,000 cardiac arrests in the US annually – 90% or about 400,000 will die.”

While this is understandable, it is not excusable. For me, every time I have a food allergy emergency, I know I could die if I don’t get quick and appropriate treatment. These numbers mean nothing when an anaphylactic crisis is taking place. It would comfort me to know that my friends could help me out if I needed it, especially since a reaction is always unprecedented. 

What concerned me even more to hear though, is that Dr. McGovern believes he never even learned how to use an epinephrine auto injector in medical school. Dr. Agnes Matczuk, an allergist and immunologist located in Connecticut, expresses concern that she herself never learned how to use an auto injector until immunology fellowship training. In her opinion, this is far too late.

“I should have been trained during pediatric residency,” Matczuk said. 

Even though this was many years ago, she still feels this “indicates holes in training,” which is supported by Dr. McGovern’s story as well.

Matczuk is also extremely frustrated by the lack of epinephrine auto injector education in public schools today. “Don’t get me started…” she began, mentioning she doesn’t understand why it’s not currently taught due to how necessary it is for the general public to also know how to save lives. 

Evidently, more needs to be done.

Already, Dr. McGovern is planning to present a talk about anaphylaxis on April 6th to the members of the Wilton Volunteer Ambulance Corps (WVAC) at their monthly lecture series. I am also accompanying him to give my own firsthand experience and knowledge. Our goal is to educate them further about the importance of prioritizing the use of epinephrine in anaphylaxis. I cannot thank him enough for doing this, as it means so much to people like me, Adams, and Krahenbuhl who face the frightening threat of anaphylaxis from severe and complicated food allergies with every bite.

Matczuk offers her own suggestions for improvement as well. 

“I think there should be greater emphasis on teaching all medical professionals how to recognize and treat anaphylaxis,” Matczuk said. “Doctors should be proficient at the medical student level, and EMTs should have it included in training. The same goes for nursing staff. Finally, epinephrine administration training should be included in CPR certification, as it currently is not.”

Anaphylaxis is an extremely dangerous health issue, especially if not addressed quickly and properly. I realize now how important it is to advocate for yourself in an emergency when you can, as well as how paramount immediate (and often recurrent) epinephrine is in reversing the potentially life-threatening course of anaphylaxis.

All I can hope is that now, you understand this too.