Global FPIES Day – Be the Voice and Put Awareness in Motion

Sometimes I feel whiney and selfish when I talk about FPIES and how it affects our lives.  The reality is that there are far greater problems out there than FPIES.  You don’t have to look far to find a story of a child who is fighting a serious or terminal illness.  There are people in Africa who are losing their entire families to Ebola.  There are children in US who are becoming paralyzed after having a bad cold.  Even within my own circle, I have friends with pneumonia and cancer and whose children have autism. Just this past week I hugged a friend who was saying goodbye to her mother and watched helplessly as friends stood beside the hospital beds of their children.  I can’t imagine the pain and fear that are so prominent in the lives of so many people – friends and strangers.

And my child can’t eat ice cream.  It sounds so petty and insignificant.  My complaining about spending extra time in the kitchen or not being able to casually eat at a mall food court on a day of running errands seems to have no basis in the grand scheme of things.  I’ll even go ahead and admit that an FPIES diagnosis is not even as horrible as having an IgE allergy.  There are no documented cases of deaths from FPIES.  The worst that will happen if my child eats soy is that he will vomit nonstop and go into shock from the dehydration and electrolyte imbalance.  I’ll rush him to the world-class children’s hospital and leading research center for FPIES that happens to be about 30 minutes from my house.  There he will receive IV fluids and will be sent home.  He will have several days of awful diarrhea and skin blistering diaper rash.  It was be upsetting to watch him go through that and stressful and I’ll worry like crazy but chances are, he will be fine.  I know that there countless people who would give anything for this to be their worst-case-scenario.

But, here’s the thing: our daily struggles are just that – they are ours.  There is no massive scale on which they are ranked and compared to others.  We all have things that ruin our days – from Starbucks running out of pumpkin spice syrup to a child who refuses to get dressed to a devastating medical diagnosis.  We’ve all had the experience of recounting the events of our terrible, horrible, no good, very bad days only to realize that nothing all that awful truly happened.  But it doesn’t matter.  In the moment your day sucked.  And you are allowed to feel sad and angry and sorry for yourself because it was your day and it didn’t go the way you would have liked.

Today, October 14, buried in the middle of Breast Cancer Awareness Month, Down Syndrome Awareness Month, Dyslexia Awareness Month, Pregnancy and Infant Loss Awareness Month, and Obsessive Compulsive Disorder Awareness Week  is our day – Global FPIES Day.  It is a day of awareness and action on behalf of all of the children and families dealing with FPIES on a daily basis.  Today I will don teal and do my best to spread the word about this rare disease that impacts every day of our lives.  I will encourage action and awareness and I will not feel guilty.

Global FPIES Day with E

I will share this information for me and for E and for all of the people who I have “met” through Facebook pages and email exchanges.  Most importantly, though, I share this information for a mom who I have never met but I know well.  She is a woman who is exhausted and covered in vomit.  She spends every night watching her infant cry out in pain.  But she doesn’t know why he is crying or why he is so upset. She nurses him to provide nourishment and comfort, not realizing that it is the couple of pieces of sharp cheddar that she managed to eat yesterday that is what is causing tonight’s distress.  She knows that something is wrong.  She knows that other babies don’t act this way.  But she is told that it is normal for babies to cry and spit up.  She is told that her baby is healthy and that he is just trying to figure out how to live in our world.  But she spends her days and nights worrying.  She worries that she is doing something wrong or that she’s missing something.  She worries that her baby isn’t growing.  That he isn’t developing appropriately.  She worries that she will never be a good mother because she doesn’t know how to calm her son.  She worries that she will never sleep again and wonders how she will get through the next couple of weeks, or even hours.  This post is for her.  I want her to know that I understand.  I’ve been there.  Many of us have been there.  She will get answers (though never quite enough).  She will figure out this mothering thing.  She will learn that she is always right when it comes to her baby, that no one knows her son the way that she does (after all, she created him!).  She will come to trust her gut and do her own research.  She will stumble across this thing called FPIES.  She will read descriptions of this rare allergy and wonder if someone has been spying on her, because it so completely describes what she has been living.  She will fight for her baby.  She will become stronger than she thought possible when faced with medical professionals who tell her there is nothing wrong.  She will become an expert.   An expert in FPIES symptoms,  an expert chef and baker, an expert mommy to her little boy.  She will be able to predict the ingredients of food on the grocery store shelves, art supplies, and toys.  She will develop the ability to walk into a room and within seconds know where the food is and what everyone is eating – she will be able to spot a toddler with a Cheerio from half a mile away.  She will cringe when she sees the words “natural flavors.”  And she will watch her son thrive despite his dietary limitations.  She will never forget the fear and uncertainty of those early months but she will view them as only a rough start to an incredible journey.  I want her to know that it’s ok to cry and feel sorry for her child and herself.  And I want to arm her with all of the knowledge that I can so that she is ready for what sometimes feels like a daily battle.  I want her to know that she is not alone.

I hope that you are not this mommy.  However, for her, the woman who is right now hoping there is enough coffee in the world to get her through the day and is searching desperately for anything that might help, I want to provide some information about FPIES.  I encourage you to read and share this information.  Even if you slept well last night and will be sending your child off to school or daycare without a care about what they will eat today or don’t even have children, you might have a friend who is dealing with this but is too tired and overwhelmed to know where to start or feels like her problems aren’t worth talking about given the other crises in the world.  Share this with parents and especially with healthcare workers, many of whom have never heard of FPIES.  Please, just for today, humor me and my first world problems and help me to spread awareness about food protein-induced enterocolitis syndrome, a rare food allergy that affects the gastrointestinal system.

I encourage you to explore all of the great resources provided by the FPIES Foundation and International FPIES Association (I-FPIES).  At a minimum, please review the picture below for the basics.  You can also take a minute to look around the blog.  The FPIES Information page provides the nuts and bolts of the diagnosis.  However, every word I write is an illustration of what FPIE is.  Please share in the struggles and victories that make up our story and know that there are many other stories being written right this moment.

FPIES Awareness Card

If you want to take an extra step, consider donating to the organizations that support the FPIES cause.  You can make a monetary donation to I-FPIES, an incredible organization that was founded by parents who want to support and encourage each other and recognizes the need for more research and empirically supported approaches to dealing with FPIES.  You can also support I-FPIES by purchasing a bravelet.  These beautiful bracelets remind us to “be brave” in the face of our daily struggles, no matter how small.  Ten dollars from every purchase is donated to I-FPEIS.  Finally, a super-easy way to help the FPIES Foundation, an organization that provides information and support to families living with FPIES, is through Amazon Smile.  When you begin your shopping on the Amazon Smile page, a percentage of your purchase is donated to the FPIES.  You set it up once and every time you shop you help increase awareness, support, and education.

Please help us be the voice of FPIES.  Learn about it.  Tell others about it.  And do what you can to put the awareness in motion.   Thank you for always supporting E and our family as we continue to thrive despite FPIES.

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