We are living in the digital age. The “Information Superhighway” was what they dubbed the Internet many years ago when it was first created. I happen to be well-acquainted with an early adopter of the Internet—TealHubs. Here is his very brief and very general History of the Internet 101:
“The Internet began its life as ARPANET, a project of the U.S. Department of Defense. On October 29, 1969, student programmer Charley Kline sent the very first message across the network, from UCLA to Stanford.
“The Internet was mostly limited to academia for the next two decades, until Sir Tim Berners-Lee gave us something that would forever revolutionize the way we communicate and disseminate information: the world-wide web. Created as a way for physicists to share information more easily, it has evolved to become the foundation of the Information Age, enabling global commerce and community on a scale not previously possible.”—Dan Lowe AKA TealHubs and resident Geek Allergy Dad.
So that was the intention many years ago. We obviously know that things have come a long way from the original DoD project. Today, more people have Internet connectivity than access to clean drinking water (even here where in places like Flint, safe water is in short supply—you can read more here from my friend MIGlutenFreeGal**and consider helping out with the ongoing Flint Water Crisis). Having access to information 24/7 gives us, as allergy researchers, the opportunity to reach out to companies much more quickly than ever before. But with great power comes great responsibility.
As consumers, we need to be good stewards of the information we share. We need to know what questions to ask when contacting a company. Many of us have a script we follow. Personally, I email and/or call, usually more than once (and at different times, on different days). Sometimes you get different information depending on who you speak to. Many times, our questions as allergy families need a more well-seasoned set of eyes and ears. We are asking more specific and complex questions than the typical customer service rep can answer.
With the labeling and your own research in hand, you need to make the best decision for your family whether a product is safe FOR YOU. I understand many of us ask about different foods online. For certain, that can be a great jumping-off point. But you need to be sure to do your own research as well. Internet forums don’t have specialized knowledge of your or your child’s situation. You need to use ALL the information you amass to make the best choice for you.
What about when things go south? I will say first and foremost, you should NEVER be on social media platforms asking for any kind of medical advice. ALWAYS have, and follow, your emergency action plan. It’s easy to run online and express displeasure or ask for support when you have an incident. Because so many of us are connected to family and friends online, it can be a quick way to get the word out. But it can also cause an avalanche if the online community catches wind of it. Sadly, I have seen this happen many times; in some cases, sharing happens very quickly, oftentimes without full information. As we all know, it’s very hard to put a genie back in its bottle. Before sounding the alarms that something may not be safe, assuming it’s cross-contact or tainted goods, there are steps you can take here according to FDA.
We as consumers have responsibilities if we suspect something has gone wrong. We need to be sure the appropriate people are notified. That includes the manufacturer and government agencies, because there could be need for a recall or other action. There is an appropriate way to do it, so as to not cause a panic, and this is especially true in the allergy community. While we might feel a need to get the word out, there are many times that it isn’t the product that has an issue. I have seen cases where new allergies pop up in people, or changes in the formula a company uses, or changes on labels, and unfortunately, complacency can lead to emergencies in our world.
These are just some of the steps we can take in the food allergy community to keep our families safe and also not to cause a panic before all the information is known. Some may see this as siding with the manufacturers, but it’s really not. I read recently about a case where a parent shared false information online (NOT allergy-related) and it caused a serious panic in a community. That parent is now being brought up on charges. We have all this information at our fingertips, and we need to be sure we use it for good. All that said, the manufacturers have responsibilities as well, and I touch on that very soon as well. I have talked a little about it here.
** If you have the means, perhaps consider a donation to help those in Flint obtain clean drinking water through this GoFundMe link.