Global FPIES Day 2015: Be the Voice

Global FPIES Day: Be the Voice

Today, October 14, 2015, is Global FPIES Day, with the theme of “Be the Voice”.

Our family was lucky (if you can call it that). Zac’s second FPIES reaction at 7 weeks old was so severe, the hospital took us seriously and didn’t just try to tell us it was a stomach bug.

Then we were fortunate enough to encounter a pediatric GI who had gone to a conference earlier in the year (2012) and had heard enough about FPIES to recognize – and diagnose – it in Zac.

While he didn’t know enough about FPIES to help us manage Zac’s care, the diagnosis alone was invaluable and set us on the right path for Zac’s continued health.

As I said, that was very lucky.

It is not uncommon for children – even now, in 2015 – to have repeated acute FPIES reactions requiring hospitalization and still wait 1 month, 5 months, even a YEAR before receiving that invaluable FPIES diagnosis.

This year’s Global FPIES Day theme of “Be the Voice” is meant to remove that diagnostic ridiculousness from the medical world. 

Be the voice of FPIES. 

Be the one who educates others about FPIES. 

Tell your doctors. Tell your teachers. Tell your friends. 

Tell everyone. 

Today, share links on Facebook and Twitter. Email stories. Use your voice to shout the stories of these amazing children who are sickened by food.

And while you’re sharing about FPIES, let’s spread the word about the Dark Act. It’s being presented to the Senate. Since it has already passed the House, if the Senate votes ‘yes’, our world will be forever changed.

We will have no idea what we are eating.

That’s not good for any of us, but it is especially bad for some  children with complicated medical issues, such as FPIES.

Not all kiddos are sensitive to chemicals, but for the ones who are, knowing how to avoid GMO’s and pesticide-laden foods is a life-saver. Passing the Dark Act will be a serious threat to these children’s health.

Spread the word today. 

Use your voice to BE the voice of the voiceless. 

Thank you. 

Here are some links you are more than welcome to share today…and always!

Global FPIES Day

I Still Have FPIES Eyes

FPIES Awareness (Still) Matters

Blog: Bullfrogs and Butterflies

The FPIES Foundation: Inspiring Family Stories

What Every New FPIES Parent Needs to Know


10 Things Other Parents Needs to Know About FPIES

Blog: FPIES & MudPies

Blog: Our Mack Attack

Blog: Our Lives and FPIES

Blog: Trials and Triumphs of Nicole

Blog: My Little Pie with FPIES


Our Superhero: Cohen’s Story (Super Cohen’s Crusade for FPIES)

Zac Walking in a Play Area

Jack’s Soy Reaction

Zac Having an FPIES Reaction

FPIES: Now I Know

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