22 January 2015

Waiving the magic wand

Every week for almost a year we've been connecting a very unique group of people from coast to coast in the United States via phone. We've developed a sub-culture in our disease. The online forum now has about 280 members. Each week 4-9 of us hop on a call to discuss various topics related to adult onset food allergy disease. 

The last couple of weeks we've discussed two great topics. 
The first was: 
"In a perfect world, if anything was possible, what tools would you like to see to better help navigate food allergies." 

Of course finding a cure is the first one for all us, but apart from that here is what the group asked for:

1. Better labeling: Because the majority of adults with food allergies have things that are not on the 8 required to b
in the US, we would just like all labeling on all products to be listed in plain language. So if there is orange in shampoo, can the ingredients just say, "Orange" please?!

2. Better educated food staff: Everyone thinks they know about food allergies but when the person with food allergies asks for help and boldly WRONG statements are being made it can turn into an ugly illness for the food allergic that lasts for weeks. All we are asking for is that every person in the food industry have proper, certified training on food allergies with some type of regular update required. It's knowing what questions to ask, knowing what to look for and how to assess safe or unsafe with confidence that is key. Some states mandate food allergy training. The federal government even mandates it but if the state doesn't agree to it or isn't checking to make sure there is at least one certified food allergy manager onsite at all times, it's worthless. 

In a perfect world, if you could waive a magic wand; what solutions would you put in place to help better manage allergic living? 

Here is the reality about finding a cure for Food Allergy Disease:  Health related non-profit organizations for things like Brain Tumor cures, Cancer, Heart Disease and Kidney disease get 10 times the amount of funding that organizations that support Food Allergies do. 
I hate to be a pessimistic person but I don't see us finding a cure in my lifetime. 
If they can't figure out cancer, heart disease and kidney disease with all that money, then I kind of don't think they are going to figure out Food Allergy disease anytime soon. It's far more mysterious than people think it is, actually. Especially because kids can outgrow it whereas adults can grow into it. I just ask that we create better tools to help navigate so we can stay positive, productive citizens of the world who don't continue to get sick and have reactions that can take us out for weeks at a time. 

Our second topic was: 
"What tools do you use in your daily life to better help you manage food allergies." 
Stay tuned for the next blog post to hear what tools may help you. You can also sign up to receive email alerts. 

If you know of a restaurant group that you'd like to see get trained, please refer them to one of our resources in Food Allergy Training & Management, there are now a handful of companies offering this service. Contact info@foodallergygal.com for more details.

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