The Importance of a Support System
Now, living with AGS is a constant learning process. A lot of the learning is via the “hard way” but luckily we have found some great mentors and friends in Debbie and Candice. Knowing people who already have AGS can be such a blessing when learning how to handle it. Living with a diagnosis about which so little is known can be daunting, but having a support system (both of people who have AGS and people who don’t) makes it easier in some ways.
Alpha-Gal Syndrome is different than most food allergies in that most people are diagnosed at a later age. As a sixteen-year-old, I am on the younger end of people who have this allergy, which is a rarity in food allergies, as many food allergies are diagnosed in early childhood. So instead of learning how to avoid certain allergens from a very young age, we’re having to learn as teenagers or older.
This makes it important to build a support system around you — people who can sit with you when you’re having an allergic reaction and waiting for the medication to kick in, friends who will pipe up and say, “She can’t have mammal” and repeatedly ask the kitchen to remake your meal until it is right, and loved ones who never scoff at you or give you a hard time when you say, “It’s just not safe.” My family is my number one support system. My mom and sister of course have AGS themselves and are always the ones I’m scarfing down a PB&J with in the car before we walk into a restaurant. My dad is Alpha-Gal Advocate #1 as he has three people he’s always making sure are staying safe. And my brother will always be the one looking at me guiltily (or not so guiltily) while he devours ice cream.
I hope that everyone can find that support system, that rock during a hard time. And I think this website is just the place to start! Also, if you’re a teen looking for extra support from other kids with allergies, FARE does monthly teen talks where you can talk with, encourage, and find encouragement from other teens with allergies. As I am writing this, I have attended one and it was just incredible how relatable the things we talked about were! I definitely plan on attending more!