National Eosinophil Awareness Week

My toddler was diagnosed with a rare allergic disorder called Eosinophilic Gastroenteritis last May. This past Friday, our little support group got enough members of the House of Representatives to get a House Resolution passed to make a National Eosinophil Awareness week, which will occur every year on the third week of May. To celebrate, I’ve posted on our family blog little things I’ve learned over the past year to cope with A’s disease. Here’s the first post of National Eosinophil Awareness Week:

I had a nice Mother’s Day this year. I got earrings from the little boys and a microplane from Nate. But, the best present I got was the news that the support group for A’s disease had gotten enough congresspersons to pass a National Eosinophil Awareness Week.

Most of us know how histamines are related to allergies and how miserable they can make life. But, a few years ago, doctors learned that histamines can trigger the production of eosinophils in some types of allergic reactions. Eosinophils are white blood cells in the immune system.

Oftentimes, people with food allergies eat something they are allergic to and histamines are triggered, creating symptoms like itchy throat, rashes, or an analphalytic reaction, to name a few. Less commonly, the reaction continues, and eosinophils come to the scene of the reaction. They create other symptoms that a histamine allergic reaction can also show like vomiting, diarrhea, and difficulty swallowing. This is what happens to A and lots of other people. (Click here if you want a really good explanation of eosinophils and Eosinophilic diseases.)

A was diagnosed with Eosinophilic Gastroenteritis last May (almost a year ago today in fact). It was a hard diagnosis because many patients with EG cannot eat any food. Can you imagine not eating? Worse yet, can you imagine not being able to feed your kids? For a while, we weren’t sure if this is what would happen to A.

But, A is lucky. He has a mild form of Eosinophilic Gastroenteritis. He is only allergic to dairy, soy, eggs, tree nuts, peanuts, shellfish, and fish. Lots of these kids are allergic to ALL food. These kids throw up when they try to eat anything. They have feeding tubes. They can’t gain weight, and they’re smaller than they should be.

I’m lucky, too. We have a great support group, AZ-APFED, and our online support group have been great resources. I meet amazing moms in these groups: moms who fight insurance companies, moms who create recipes out of the two or three “safe” foods their kids can eat, moms who stop eating the foods their kids are allergic to so that their kids can continue to be breastfed.

Eosinophilic Gastroenteritis is still a “new” disease, so these support groups are important for getting people together to figure out how to spread awareness in the medical community, how to get insurance companies to cover amino-acid formulas and supplies, or how to entertain your child who can’t eat while everyone else sits down to Thanksgiving dinner.

No one knows this disease’s long-term impact, why so many more people are showing these symptoms, or how likely remission is for those who have it, which is why getting this National Eosinophil Awareness week is an important first step for our little group.

In honor of this week, I’m going to post something every day that I’ve learned as a mom dealing with this disease.

EmilyCC

EmilyCC works for a national non-profit and lives in Phoenix, Arizona with her spouse and three children. She is a former editor of Exponent II and a founding blogger at The Exponent.

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  1. Deborah says:

    I’ve followed your journey with — and dedication to — Asher with great admiration and respect. You are an awesome woman for the advocacy work you do on this.

    I have similar questions with both food allergies and autism — are they as on the rise as they seem or are we simply better at diagnosing kids who would otherwise 1) be labeled something else 2) die from “failure to thrive”? And if it is the former, why?

    Because of my husband’s food allergies, I almost never eat processed food anymore. After five years of this modified diet, when I *do* eat the occasional fast-food burger or chain chinese, I tend to have unpleasant physical reactions — not allergic reactions, just bleck. Which makes me wonder about what goes into food, what preservatives and flavor enhancers are doing to our bodies long-term, etc. All of which my have nothing to do with your son’s disease . . . but your post got me thinking . . .

  2. Deborah says:

    Just read through the articles you linked to — eye-opening. My plug for others to do the same . . .

  3. Maralise says:

    How did I miss this! Emily–thank you for your work. I’m so excited about the import of this week to those of us facing this disease.

    I was speaking to my OB the other day and mentioned that my son has EE. She immediately knew what it was. With much surprise (OK SHOCK), I asked her why. She replied, “I have it too.”

    For me, her intimate familiarity with this rare disease gave me hope that this disease and patients like Asher and my son are increasingly showing up “on the radar” of the medical community.

    Part of the shock of my baby’s diagnosis was that it was so rare, so unheard of, and therefore, so scary. I’m so thrilled that other parents will have more information than I had.

    Thank you…

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