Why limit food allergy voices?


Recently, a post was made in the food allergy community talking about tearing down scaffolding yet again. First, I am not really sure why we are using the term “scaffolding” when we talk about food allergies. That being said, I have to assume this post was written because with the Keebler Cracker fall out, there has been division within the food allergy community its self. The Facebook allergy support groups have gotten pretty heated. I read this latest post and I tried to have an open mind. I must, however, highlight what was going through my head reading it. 1st and most obvious the picture yet again had peanuts as the representation of the issue, when in fact we have top 8 allergens, all of which can cause anaphylaxis. What disturbed me most was the request to keep our voices silent if we disagree–to allow a panicked mother to remain in her panic and support her in that state; to not  tell her the risks are low; to not talk her down; to basically yes her. It basically said if you don’t agree, keep quite.

The post also said those who do speak up and say “wait a minute” are divisive and hurting the allergy community as a whole. I can’t understand this. Why would anybody want to live in a such a panic state? To the point they limit themselves from activities when it’s not warranted? Why can’t a mom who has been there say, hey stop! We got through it! and share strategies that don’t include full on limiting of activities such as going to the playground in fear. How can that be bad?

It is ironic that the parents who are often attacked are the ones who speak up against the groups’ popular opinion, not the other way around. I mean if a food allergy parent says they don’t support a peanut ban, or a petition or a lawsuit, you better duck for cover because it gets ugly. We are not allowed to have these opinions.

Facebook groups are not really support groups; they are also not medical diagnostic groups. They are discussion groups. Many people have many different allergens, and many different approaches to how they handle their allergies. As indicated by the most recent scaffolding post, however, we are dealing with a situation where only one voice is allowed to be heard. Our different approaches and opinions should be celebrated not attacked and censored. At the end of the day, we all want happy, healthy and well-adjusted kids. We also want people to know that there are many types of food allergies and ALL need the same respect.



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