What I learned at FARECon 2018
Every year FARE holds an annual conference for adults and a summit for teenagers. This year the event was around the corner from our home in DC so Melissa, co-founder of Foublie, joined the fun! FARE is the largest NGO in the US working on food allergies. They provide education and advocacy, improve access to diagnosis and treatment and expand research on food allergies.
As a new ally to the food allergy community, I continue to be amazed by the strength, creativity and drive of parents and kids! For those that missed out (this thing sold out!) here are my takeaways:
10. Teenagers are going to change the world
The event kicked off with a pitch competition. Maria and I have pitched a few times and it is scary! This bunch was polished and had great ideas. The winner in the concept category was Teresa Hooker who presented a food allergy song to help peers know what to do if a friend or classmate goes into anaphylactic shock. The winners of the prototype category were Malaina and Zidaan Kapoor with EpiMagnet a sleek, discrete way to carry your epinephrine or medicine.
9. There are many theories around what causes food allergies, but the answer is still unknown
I am always amazed to learn how much about the world and our own bodies we just don’t know. Anaphylactic reactions to food have increased almost 400% in the past 10 years, so something is going on. Some theories include genetics, hygiene (today we are too clean), our gut biome, the environment (pollution, tobacco), infant food avoidance, maternal diet, vitamin D deficiency, to name a few! Because the cause is unknown, it is harder to identify the pathways involved to devise a treatment or cure. Which leads to me the next point:
8. The best and brightest have dedicated their careers to finding a cure to food allergies, and they are getting close
It is a very exciting time. Scientists and researchers are getting closer to finding treatments and a cure, but they are not done yet. Most of this work is limited to peanut allergies. The hope is once there is success with peanut, the same mechanism can be used with the other foods people are allergic to.
7. Tests for food allergies aren’t great
The tests we use for food allergies aren’t ideal. A blood test or skin test can be positive, but what matters is what happens when the person ingests the food. The gold standard test therefore is to do an actual food challenge but these can obviously be risky and have to be done under an allergist’s supervision. The most important part of a diagnosis is a person’s history. Most people want to jump to tests because they think it will provide an answer when it can actually cause confusion and lead to avoidance.
6. It can be hard to figure out if you have a food intolerance or a true food allergy
The perceived prevalence of food allergies, meaning the people who think they are allergic to something, is estimated at 20-25% of people in the US. However, true prevalence is about 12%. Why the discrepancy? For one, it could be a person is experiencing a food intolerance. These are also reactions to food, they can suck, but they are not life threatening.
5. Australia is the only country in the world that has a higher prevalence of food allergies than the US.
One major difference in recommendations between these two countries is that in the US doctors recommend vitamin D supplementation. There is currently a randomized control trial underway (this is the gold standard for research) to see if supplementation has a protective impact on if a child develops a food allergy.
4. Disordered eating in food allergic people is something to watch out for
Most people we’ve talked to in our adventure to create Foublie tell us about what food means to their family and themselves. Food memories can bring us back to our grandparents home. They are social. I personally love to cook because it relaxes me. We all have a relationship with food beyond energy. I never thought about what happens when food can kill you, and how to recover from an allergic reaction. Disordered eating can be a big grey box, especially with a food allergy! The diagnosis fundamentally changes how you must be vigilant about food. I highly encourage every parent to go here to learn more about how to be mindful and on the lookout.
3. For teenagers and their parents, transitioning the management of the food allergy is a thing
Our Foublie fams have children under that age of 10 and are usually new to their food allergy journey. Once a family learns how to manage a food allergy it’s likely something will change. Children grow up and that means new schools, new friends and new challenges. One exciting change is see a child become independent. The frontal lobe of the brain, the part that guides decision making, fully develops at 25… way after a child moves on to a job or college. Figuring out the dance between full control and independence and also total safety and normality is a part of life.
2. We make nutrition more complicated than it needs to be
I sat through a really wonderful presentation on healthy eating. I love nutrition and happily nerd-out when someone talks to me about micronutrients like vitamins and macronutrients like protein! But what does that mean when you need to put food on the table and plan what your family eats? The real takeaway is, you are probably feeding your family what they need if you provide a ‘balanced diet’. Foublie is here to help you figure out what that actually means for your family. It is doable! Read more about nutrition here.
1. Thank you to FARE!
I met wonderful people. I was inspired. I learned so much. See you next year!