Written by Michael Pistiner, MD, MMSc

Faster than a speeding bullet

Superman is the epitome of health: able to leap over tall buildings in a single bound, more powerful than a locomotive.   Much like many of our children, superman is seemingly invincible.  And, much like children with food allergy and other causes of anaphylaxis, Superman is weakened and in danger with even the smallest amount of a substance that is harmless to most.  In his case, Kryptonite and in theirs, an allergen.

 

How can it be? It’s just a food allergy.

For some, this idea of going from perfect health to a life threatening reaction is a very difficult concept to accept.  It can sometimes be hard for parents to look at their healthy, active child and imagine that they could ever be sickened, let alone experience a life threatening reaction (anaphylaxis) to a food. When past reactions have been severe though, all it takes is once and the reality sinks in hard and fast.  A family’s surrounding community may take a bit of education to “get it.” When the people that parents rely on have a difficult time accepting the reality of a food allergy, it can make our job as parents very challenging.   We need secondary care providers: babysitters, relatives, coaches, etc., to implement the very same avoidance strategies that we do when they care for our children.  It takes effort for us to get them on the same page. It can be dangerous if we compromise food allergy management for even a moment.

Food Allergies Bring Change

Having a child with a food allergy means that we need to modify our behavior.  At times we need to call attention to ourselves when we may not want to.  For example, in a restaurant when we need to ask to speak to the manager and chef, or before school starts when we set up meetings with the school nurse.   We must bring auto-injectors with us everywhere and at times restrict foods.  Sometimes it may feel like it is going against the grain.   At times we may need to be the ones to administer an auto-injector into our own child’s thigh. These are all things that many of us wouldn’t be doing unless we had to.  

 

It takes food allergy education

When people perceive certain situations as being less risky than others, they may not implement appropriate food allergy management.   If caregivers do not have the opportunity to learn the basics, such as how to read a label, the importance of epinephrine, or how to give an auto injector, it will be impossible for them to do what they need to do.  Access to allergists can be problematic in some areas, with few physicians and long wait times.   Sometimes, primary care providers and emergency department doctors may not have the time or awareness of the importance of prevention and preparedness strategies so this teaching may not happen.

 

Bringing health to patients and families with food allergies

For healthcare providers, ensuring our patients’ health may be more complicated than just delivering basic medical care (diagnosing food allergy and anaphylaxis, prescribing auto-injectors, etc). Other factors that play a huge role in management of food allergic patients must be considered and addressed, especially  behavior and social circumstances. This is the case in many chronic diseases (diabetes, asthma, obesity, high blood pressure, etc.). Behavioral and social contributors play major roles in a patient’s health. (McGiniss et. al. The Case for More Active Policy Attention to Health Promotion. Health affairs. 2002).    This is clearly seen with managing food allergies.

Behavior clearly plays a role in adolescents and  young adults with food allergies.  They are the highest risk age group for food allergy related deaths.   Risk taking behavior (Sampson et. al. Risk-taking and Coping Strategies of Young Adults with Food Allergies. JACI, 2006) may play a major role in this increased mortality in this age group as a result of social pressures and compromised decision making.  Doctors and other healthcare providers must encourage behaviors that decrease risk and prevent accidental exposures.  We must also take our patients and families’ social situations into consideration when educating about food allergy management.

 

Social media can extend the reach of food allergy providers

 

Healthcare providers see our patients for a very small percentage of their lives, no more than a few hours over the course of a year.  The time that we are face to face truly needs to be optimized.  Another way we can help families modify behavior is to extend our reach and have more contact points with the families that we serve. The internet can be a great resource for this. Using online teaching tools can help give the families an awareness to help them modify behavior.  The addition of social media and an online community can take it a step further.  Countless parents are discovering that they are not alone.  With the support of these new communities, making the behavioral change, and managing food allergies in all settings  isn’t quite so isolating or difficult.

With great power comes great responsibility

 

Using social media and blogging is an amazing way to share what we have learned so other individuals and families don’t need to face the same challenges and feel overwhelmed.  It’s an amazing thing to be able to write for and lend support to an immediate audience of thousands. There are so many that rely so heavily on social media as a primary source of their health information.  And for all of us that are using this venue to share and to educate, whether it be patient, parent, nurse, or doctor, it so important for us to be meticulous in fact checking and to be careful in the messages that we deliver.  We all must take this seriously when lives may depend on it.

 

Where do you get your food allergy management information?

Before leaving this blog please drop a comment below sharing where you get the majority of your information about food allergy management. Is it your healthcare providers or is it from social media or the internet?