Personal Autoinjector Stories

Hi everyone! My name is Grace Williams and I have been allergic to eggs, milk, almonds, and mustard since I was born. Now, as a 17 year old rising senior, I have become comfortable with the fact that I have allergies that require epinephrine to treat. I didn't always feel at ease about the realities of my allergies though, as I used to be terrified of using my EpiPen. Every time I used to consider using an auto-injector, I couldn’t help but worry about the possible negative aspects of administering epinephrine. I was terrified of many things, such as the pain of the needle or having to endure the potential side effects of the drug. These fears continually clouded my better judgment for many years, as I would repeatedly sit through bad reactions, hoping that they would miraculously go away on their own. I always knew that I needed to use epinephrine, but to me, sitting through the extreme discomfort of a reaction was better than having to use a big needle. I continued this dangerous habit until one day a few years ago- the day I learned how wrong I was about using auto-injectors.

That day, I had eaten a brownie that contained milk chocolate chips, despite being labeled as vegan. I took a few bites and in under five minutes, my throat had completely closed up. Unable to breathe and knowing that I didn’t have any other option, I administered epinephrine. I then realized that when I was having an anaphylactic reaction where my life was on the line, the pain and side effects of using an auto-injector were practically unnoticeable compared to the immediate relief I felt.

The needle in an auto-injector feels no different than a shot, and the area on my thigh usually becomes sore and bruised for a day or so. Although there are a multitude of possible side effects related to epinephrine use, the ones most prevalent for me are uncontrollable shaking, an increased heart rate, and sweating. For me, these side effects can last for multiple hours up into the next day, and I usually take long naps to recover and pass the time. Some of these side effects may sound bad, but they are nothing compared to the symptoms of a severe allergic reaction.

Overall, the many positive effects of using an auto-injector greatly outnumber the few negative aspects. Epinephrine can save your life, after all. The relief that immediately floods your body will be so much more prevalent than any auto-injector-related worry you may have. Epinephrine should be used as prescribed or when you start to see signs of a severe reaction, and if you aren’t sure whether to administer or not, it is better to play it safe and use your auto injector. Epinephrine is much safer than what could quickly become an anaphylactic reaction. I know that using an auto-injector seems scary, but it truly isn’t frightening in the moment. I hope that by sharing my experience with auto-injectors, I may help ease what is a very normal fear for many food allergy patients. I promise, in a serious reaction, epinephrine will be your best friend!

In my experiences with food allergies, I have used an auto-injector on two separate occasions  during a severe allergic reaction. In these extreme situations it can be very stressful and confusing. Luckily, I familiarized my family and friends on how to use and help me administer the auto-injector. It is very important for people with and without food allergies to understand how to use auto-injectors in these life or death situations. These situations can be calmer and safer with the knowledge of the importance of epinephrine. My ability to use epinephrine has allowed me to experience my life with confidence and in ways that I would otherwise have apprehensions. I do not want my allergies to prevent me or others from living a full life.
 

My Allergic Reaction by Susan Tatelli

I wake up vomiting.  
Shaking.
Gasping.
Struggling to breathe.

My mom bolts up from my trundle bed.

We both KNOW.
I need to administer my epinephrine.

To be admitted into a clinical trial for my peanut allergy, I had to undergo (and fail) a double-blind food challenge -- a scenario designed to prove my allergy.  Earlier that day, I had done just that -- failed a peanut challenge.  I was having a secondary, biphasic anaphylactic reaction.  

I jam the EpiPen into my thigh.
I’m not ready for the kickback.  
The EpiPen pops out immediately -- not the required 10 seconds.  
Blood pours down my leg.
I know I have to try again -- with a new EpiPen.  
I close my eyes, take a deep breath, and try again.  
I know what to expect this time.

For most of my life, I avoided my allergens (peanuts, tree nuts, soy, and hemp) and carried epinephrine.  My doctors taught me what to do if I had a reaction, and every year, my family conducted an “anaphylactic reaction drill” -- like a fire drill.  Unlike most people, I understood epinephrine was a very safe drug, and I knew it was not to be used as a last resort, but I still dreaded having an anaphylactic reaction. 

That night, I realized epinephrine is not to be feared.

That night, I realized why risk-taking, “invincible” teens who do not carry epinephrine are at the highest risk for fatal anaphylaxis.

My failure to properly administer my epinephrine taught me it is often not enough to “know” something -- the greatest lessons, the ones I remember -- are a combination of knowledge and experience, and come from a willingness to continue trying -- even after failure.

After failing the peanut challenge, I was enrolled in a clinical trial in which I was required to consume my allergen daily.  The clinical trial was exceedingly difficult, and I had countless reactions including six more epinephrine-requiring anaphylactic reactions.  Many people -- including my doctors -- thought I should withdraw, but I didn’t ever truly consider it because I believed the researchers could learn from my experiences and help others.  In time, I grew to understand I could save lives by sharing my story.

I am naturally quiet and reserved, but by the time I was 13, I believed I could save lives by sharing my story.  I started talking and writing about what I termed “Epinephrine Readiness:”  recognizing anaphylaxis, knowing what to do, and carrying two epinephrine auto-injectors at all times.  I compiled my videos, written materials, and visual aids into a bilingual (English/Spanish) Epinephrine Readiness Training Kit with the goal of taking the fear out of anaphylaxis.  

My goal?
That one day, no one will fear epinephrine!

Check out my videos on anaphylaxis here, here and a Spanish version here.