Nothing feels more isolating than the discovery of severe allergies. Whether it's you or your kids, it feels like leaving the house is as daring as a Grand Canyon tightrope walk. When life can be snuffed out by an allergy to one wee little peanut, it's easy to feel overwhelmed, I know.
But you're not alone; allergy support is as close as Facebook.
When my son was first diagnosed with food allergies, he was just an infant (and still being exclusively breastfed). So I had ultimate control over what he ingested. I was his source of food, so I had to strictly limit what I ate. His reactions were generally gastro- or eczema-related, not life-threatening at that point.
I didn't know where to start learning about all his allergies, it all seemed like too much information. I reached out to friends online for their experiences while waiting (months!) to see a pediatric allergist. The learning felt exhausting, and often contradictory.
When he started eating solids, and then eventually started nursery school, I was even more afraid because suddenly I didn't have as much control. As it turned out, his worst reaction (to tilapia, of all things) was from a meal I'd cooked him, while I was alone at home with him and my daughter. Calling 9-1-1 while my baby's eyes turned red, and his face and lips swelled to epic proportions was one of the most frightening things I've ever had to do.
So, yes, I know just how scary allergies can be, and how important it is to have a community to rely on for support. We have carried an EpiPen ever since Mason's trip in the ambulance, and although we're lucky that he has outgrown a lot of his allergies, we still have to manage others. We have to always be on high alert, with EpiPen Auto-Injectors in the house, in my purse, at his schools, with his sitter.
You never know when a reaction will strike; living with allergies always feels a little like rolling the dice and hoping for the best. At three-and-a-half, Mason already knows to ask permission before eating anything, and will ask if we have his EpiPen with us. I'm not sure how I'll fare once he starts kindergarten in the fall; it's hard letting go when you have an allergic kid.
Travelling is nerve-wracking because many places don't really understand the severity of some allergies, and we always have to be aware of the locations of hospitals in case we do have to ever use his EpiPen. While the EpiPen does offer us the comfort of knowing we can help save his life, he would have to head straight to a hospital after using it, anyhow, and we'd have to be near a hospital for the next 48 hours. It's all very stressful emotionally, that's for sure. But knowing we're not alone is a huge relief. Just having the opportunity to connect with other parents who've gone through this before, or to chat with those just learning about it helps us immensely.
I feel very lucky to be a parent in this digital time. Sure, there are downfalls, and yes, Dr. Google isn't always the most reassuring, but the communities I've found online are the best. So many others are going through the same things, or have already experienced this, and are happy to share their knowledge. Here's a round-up of some of the most helpful allergy support groups I've found on Facebook where you can find tons of great information, and most importantly: empathy and commiseration.
Great news! EpiPen has launched their own Facebook page to provide people with a forum through which they can share their own experiences and connect with other EpiPen users across Canada. They'll also be sharing helpful news, information, tips, and advice for safely managing severe allergies.
Toronto Anaphylaxis Education Group (TAEG) offers support groups for those dealing with the psychological stresses related to the diagnosis of severe allergies. They also provide speakers for educational purposes, like schools and organizations who need to be aware of how to handle these allergies.
The Kids with Food Allergies Foundation aims to empower families raising kids with food allergies to help them create safer environments and healthy futures for their children. They provide great content and reader commentary, too.
Allergies Everyday is a group of people dealing with allergies, this one offers a bustling community of members asking and answering questions based on their personal experiences. Lots of commiseration happening here, with links to news and pertinent studies for allergy sufferers!
Allergic Child was started by the parents of allergic children, this group also offers great resources. Parent Nicole Smith has also published three children's books about food allergies. They provide helpful tools (like a drop-off form for allergic kids, how great an idea is that?) for parents.
Anaphylaxis Canada is a great group with Canadian content meant to both educate and advocate for the needs of families dealing with anaphylaxis. You'll also find all the latest research and study results here. Very handy!
The No Nuts Moms Group is one of the busiest of the allergy groups to which I belong. I love the current news pieces they provide and the member chats about their own experiences. They really encourage everyone to support one another with advice and experience, while also sharing the latest in findings.
The Food Allergy Support page is another bustling community-based group. This page shares anything and everything allergy-related. It's a great forum for asking others their experiences with allergies.
This is proudly sponsored by EpiPen®.
The opinions expressed in this post are the opinions of the individual author and may not reflect the opinions of Pfizer Canada, the Canadian distributor of EpiPen. Pfizer Canada reviews all material to ensure medical accuracy of statements.
EpiPen® and EpiPen® Jr (epinephrine) Auto-Injectors are indicated for the emergency treatment of anaphylactic reactions in patients who are determined to be at increased risk for anaphylaxis, including individuals with a history of anaphylactic reactions. Selection of the appropriate dosage strength is determined according to patient body weight.
EpiPen® and EpiPen® Jr Auto-Injectors are designed as emergency supportive therapy only. They are not a replacement for subsequent medical or hospital care. After administration, patients should seek medical attention immediately or go to the emergency room. For the next 48 hours, patients must stay within close proximity to a healthcare facility or where they can call 911. To ensure this product is right for you, always read and follow the label. Please consult the Consumer Information leaflet in your product package for complete dosage and administration instructions.
© 2013 Pfizer Canada Inc., Kirkland, Quebec H9J 2M5 • Toll free: 1-877-EPIPEN1 (1-877-374-7361)
EpiPen®, EpiPen® Jr are registered trademarks of Mylan Inc. licensed exclusively to its wholly-owned affiliate, Mylan Specialty, L.P.; sub-licensee, Pfizer Canada Inc., Kirkland, Quebec H9J 2M5