Thursday, August 8, 2013

An unrecognized necessity: Allergy Support Systems

Ten years ago my daughter was diagnosed with food allergies.  She is the first (and currently the only) person in my family or my husband's to have food allergies.  I had no experience or knowledge to draw from as I learned how to manage this new way of thinking about and preparing food.

At the time I was still nursing.  Yes, my daughter was reacting to the foods I ate and then passed to her through my milk.  That meant I had to eat only foods that were safe for her.  I dropped 30 pounds like a hot rock.  My friends all commented on how great I looked! My response? "Thanks! I quit eating."
It wasn't far from true.  I removed dairy, eggs, and nuts from my diet in one fell swoop.  If I were not nursing I think I would have added liberal amounts of alcohol to compensate.

Know how we giggle at our parents when they tell us how they used to walk to school, in the snow, three miles, uphill both ways?  The story for allergy moms is that I used to read labels, top to bottom, with no allergen labeling laws, and allergens written in code.  I did!  Grocery shopping took hours for those first few months while I learned how to be a label detective. On. Every. Single. Food.  Frozen chicken breast.  Just plain frozen chicken breast. Had added dairy.  I kid you not.  I may have expressed my opinion of adding dairy to a darn chicken breast just to freeze it in vocabulary that was, um, creative.

I am thankful today for the labeling laws that make it easier to figure out what is in the food we eat. I am beyond grateful that the internet now has exactly 8,793 other food allergy moms that are blogging about their experiences raising and feeding allergic kids.  Bless them for sharing their recipes, their tips, their feelings, and their own colorful euphemisms.  Technology also brought us Twitter, a support network full of #foodallergymoms that you can run to and vent 24/7, and someone will hear you.  And often someone will share a solution.

Today I wish every physician who diagnosed food allergy also knew how dramatically the diagnosis would impact every member of the family.  How terrifying, dividing, and isolating the diagnosis can become.

I wish that each newly diagnosed patient were connected with a resource network that included knowledgeable allergic peers, fact driven forums, a local coach to walk them through the changes that come with transitioning to an allergy free lifestyle, and a mental health professional that understands the true impact this disease has on families.

Because right now, even with all the advances in allergy knowledge and support available, patients get an epi-pen and a pat on the back.

We should be able to do more.  Ease the transition.  Support the mental health.  We've come a long way, but there is still progress to be made.

No comments:

Post a Comment

Always happy to hear from you, but please remember to play nice!