Ok. It’s now the last week of Food Allergy Action Month and National Asthma and Allergy Awareness Month and I’ve been pretty bad about keeping up with my commitment to participate. However, I haven’t been as negligent as it seems. I’ve just been more focused on acting and less focused on posting about my actions, which of course, is no way to raise awareness. So, in the homestretch I want to highlight one of the more important aspects of allergy awareness, something that I think everyone should know about, regardless of the amount of contact you have with people with food or other allergies – Anaphylaxis.
It’s a couple of weeks late, but Wednesday, May 14 was Anaphylaxis Awareness Day. Anaphylaxis is the result of an IgE-mediated allergic reaction and not something that most people with FPIES has to worry about. However, some children with FPIES also have IgE-mediated allergies to some foods. For example, E tested positive for an IgE allergy to cow’s milk. We aren’t really sure if he would have an anaphylactic reaction to milk or if he would have an FPIES reaction, or if he has outgrown the allergy and would be fine. Either way, we are prepared. We always have an epipen on hand and have become very familiar with the symptoms of anaphylaxis, just in case.
Even if you don’t know anyone who has tested positive for an IgE-mediated allergy, it’s important to recognize the symptoms of anaphylaxis. Unfortunately most people are diagnosed with an allergy after their first anaphylactic reaction. Think about it, allergy testing isn’t routine, so how would you know you allergic, other than having a reaction? Also, allergies can develop at any time. My aunt ate seafood all of her life and as an adult had a sudden, unexpected anaphylactic reaction to fish. Now she carries an epipen and avoids all fish and shellfish. Knowing the symptoms of anaphylaxis will allow you to recognize a reaction, realize that it is serious, and know how to react, whether it’s in yourself, your child, or a stranger. The most important reason to be familiar with these symptoms is because the response has to be fast. Depending on the severity of the allergy, you may only have seconds to respond with epinephrine before the person stops breathing. If you can recognize the symptoms and respond by injecting epinephrine quickly, you could save a life. FARE has put together this great overview of anaphylaxis. Please review it so you know what you are dealing with and what to do if you see anyone with these symptoms. Based on this information, I hope it’s clear to you that administering epinephrine as quickly as possible is imperative. Giving an epipen injection is a little scary, but I’ve never heard of anyone who regretted it. The person having the reaction is usually so focused on their anaphylactic symptoms that they don’t even feel the needle. And it’s better to err on the side of caution – you can not hurt someone by giving an unnecessary epipen injection. IT IS ALWAYS BETTER SAFE THAN SORRY when it comes to an allergic reaction. You can watch a demonstration video online or ask for a demo from someone you know who carries an epipen. The more familiar you are, the less scary it will be and the more effective you will be. When E was first diagnosed we held a family meeting so that all of his grandparents, aunts, uncles, and even his eight-year-old cousin would be familiar with the symptoms and what to do. We passed a demo epipen around the group and everyone practiced. We haven’t had to use it (Thank God!) but we are ready if we ever do need it.
Of course, all of this is only relevant if you have access to an epipen. What about someone who left it at home that day or one of those people who are having their first reaction and didn’t even know they had an allergy? In general, the only thing you can do is call 911 and hope their response is fast enough. However, FARE and other food allergy advocates are working hard to increase access to epipens, especially in schools. There are several bills in the works for increasing access to epipens and you can help by contacting your representative and asking them to support the new laws related to epipens.
I know, you are thinking that there is no way you have time for that. But FARE makes it so easy – there’s really no excuse! The Action on May 6 was to sign up for the FARE Advocacy Action Center. I had never heard of it, but in keeping with my commitment to Food Allergy Action Month I decided to at least check it out. It was amazing. All you have to do is complete an information form and the website figures out who your elected officials are. You choose the actions that you want to support, the website provides you with an email that you can send or edit as you see fit, it figures out which of your elected officials should receive your letter, you click submit and then you sleep better at night knowing you are doing what you can to help people who are living with food allergies (even those who don’t even know it). It took me about 5 minutes to send emails to congress to support funding for stocking epinephrine in schools and to support funding for food allergy research. I also signed up to receive an alert whenever there is a new campaign that needs my help.
Thank you for becoming more aware of the symptoms of anaphylaxis, what to do if you see the symptoms, and maybe even urging congress to help protect those who are at risk for anaphylaxis. Those of us who love someone at risk for a reaction really appreciate it!
Have you been participating in Food Allergy Action Month? What have you done this May to make the world safer for people with food allergies?