National Eosinophil Awareness Week

Hello! I am THE worst at updating this blog!
I kept starting this post but something kept coming up.
AND I got a nasty stomach bug that kept me close to the toilet for a few days. It was not fun!

But I wanted to do this post last week.
The week of May 15-21 was:
National Eosinophil Awareness Week!

So what the heck is that? As I've mentioned a few times before, I have Eosinophilic Esophagitis, also known as EE or EoE. This means I have too many eosinophils, a type of white blood cell, in my esophagus. There shouldn't be any eosinophils in the esophagus, but I happen to have quite a few. So when I eat something I'm allergic to, my EE flares up and it causes inflammation. When it gets too inflamed, I have a muscle spasm.
This sounds pretty painful, and believe me, it is.
But there are other kids out there with EE and other eosinophilic disorders that have it way worse than me.
A common symptom is dysphagia, which causes the esophagus to become really rigid and food is impacted. Many kids have to go to the hospital to get the food removed and some even have to have feeding tubes.

Check out these families' stories:

Winning Against Eosinophilic Esophagitis

The Joys and Challenges of Raising Children with Special Needs

Sometimes Mommy Needs a Beer

So the week of May 15-21 was National Eosinophil Awareness Week. This year the theme was EDUCATE:

So what did I do to EDUCATE?
Well I made some pretty rad tshirts.

I even had a man come up to me and ask me about my shirt, then proceded to tell me that he had an eosinophil disorder!

And I made this cool DUM DUM sucker basket. Spangler, the maker of Dum Dums, now sponsers APFED, the organization for eosinophil disorders.

I really wanted to leave it at my allergist, but they wouldn't let me because it was a food item and it was too risky for people with food allergies. But my boss happily agreed to let me leave it on the counter at The Vitamin Shoppe.

Though the week is over, there are still things you can do!

You can tell people about eosinophilic disorders, share this blog link, and even visit APFED's website to find out more. You could also donate to APFED :)

You can add APFED's facebook page or NAEW's facebook page.

You could participate in the Eat Like Me for a Day Challenge. You could eat like me or another EE sufferer. I can't eat anything with milk, eggs, soy, peanuts, peas and oats. And you can't eat out!

Thanks everyone for your support!
And next time you eat, think about all the kids and adults that will never get to enjoy that.


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Perry Kong said...

I think this is truly a heroic struggle and colossal achievement on a day-to-day... let alone all that you've done to promote and raise awareness. I think many people will find your site and courage inspiring, particularly those of us who 'think' we're struggling when it's just a case of poor discipline (like me).
I've made note of a few veggie challenges this week as I wrestle with some foodie habits, and when I'm done those I'll definitely take you up on yours, and I'll be sure to set some writing time aside to help you raise awareness.
I hope this message finds you safe, happy and healthy.

Simply Life said...

wow, way to be active with this important issue!

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Anonymous said...

very interesting, thanks

Unknown said...

OMG! I just as just diagnosed with Eosinophilic Gastritis (I am so proud I can now say AND spell that without struggling) and I want one of those t-shirts!

In all seriousness there is sooo much to learn and I welcome all tips on how to manage this annoying disorder.

Christian Baluyut said...

It might be easy to assume that you have chronic GERD or acid reflux, but it might also be just a symptom of something else. That “something else” could be EoE – or eosinophilic esophagitis. Some of the symptoms (apart from GERD and acid reflux) include difficulty swallowing, chest pains, persistent heartburns, backflow of food that you weren’t able to digest. If these are all too familiar, check with your physician to see of you indeed have EoE!
click here for more details