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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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Anaphylaxis & How You Can Help – Food Allergy Action Month

Ok.  It’s now the last week of Food Allergy Action Month and National Asthma and Allergy Awareness Month and I’ve been pretty bad about keeping up with my commitment to participate.  However, I haven’t been as negligent as it seems.  I’ve just been more focused on acting and less focused on posting about my actions, which of course, is no way to raise awareness.  So, in the homestretch I want to highlight one of the more important aspects of allergy awareness, something that I think everyone should know about, regardless of the amount of contact you have with people with food or other allergies – Anaphylaxis.

It’s a couple of weeks late, but Wednesday, May 14 was Anaphylaxis Awareness Day.  Anaphylaxis is the result of an IgE-mediated allergic reaction and not something that most people with FPIES has to worry about.  However, some children with FPIES also have IgE-mediated allergies to some foods.  For example, E tested positive for an IgE allergy to cow’s milk.  We aren’t really sure if he would have an anaphylactic reaction to milk or if he would have an FPIES reaction, or if he has outgrown the allergy and would be fine.  Either way, we are prepared.  We always have an epipen on hand and have become very familiar with the symptoms of anaphylaxis, just in case.

Even if you don’t know anyone who has tested positive for an IgE-mediated allergy, it’s important to recognize the symptoms of anaphylaxis.  Unfortunately most people are diagnosed with an allergy after their first anaphylactic reaction.  Think about it, allergy testing isn’t routine, so how would you know you allergic, other than having a reaction? Also, allergies can develop at any time.  My aunt ate seafood all of her life and as an adult had a sudden, unexpected anaphylactic reaction to fish.  Now she carries an epipen and avoids all fish and shellfish.  Knowing the symptoms of anaphylaxis will allow you to recognize a reaction, realize that it is serious, and know how to react, whether it’s in yourself, your child, or a stranger. The most important reason to be familiar with these symptoms is because the response has to be fast.  Depending on the severity of the allergy, you may only have seconds to respond with epinephrine before the person stops breathing.  If you can recognize the symptoms and respond by injecting epinephrine quickly, you could save a life.  FARE has put together this great overview of anaphylaxis.  Please review it so you know what you are dealing with and what to do if you see anyone with these symptoms. Based on this information, I hope it’s clear to you that administering epinephrine as quickly as possible is imperative.  Giving an epipen injection is a little scary, but I’ve never heard of anyone who regretted it.   The person having the reaction is usually so focused on their anaphylactic symptoms that they don’t even feel the needle.  And it’s better to err on the side of caution – you can not hurt someone by giving an unnecessary epipen injection.  IT IS ALWAYS BETTER SAFE THAN SORRY when it comes to an allergic reaction.  You can watch a demonstration video online or ask for a demo from someone you know who carries an epipen.  The more familiar you are, the less scary it will be and the more effective you will be.  When E was first diagnosed we held a family meeting so that all of his grandparents, aunts, uncles, and even his eight-year-old cousin would be familiar with the symptoms and what to do.  We passed a demo epipen around the group and everyone practiced.  We haven’t had to use it (Thank God!) but we are ready if we ever do need it.  

Of course, all of this is only relevant if you have access to an epipen.  What about someone who left it at home that day or one of those people who are having their first reaction and didn’t even know they had an allergy?  In general, the only thing you can do is call 911 and hope their response is fast enough.  However, FARE and other food allergy advocates are working hard to increase access to epipens, especially in schools. There are several bills in the works for increasing access to epipens and you can help by contacting your representative and asking them to support the new laws related to epipens.

I know, you are thinking that there is no way you have time for that.  But FARE makes it so easy – there’s really no excuse! The Action on May 6 was to sign up for the FARE Advocacy Action Center.  I had never heard of it, but in keeping with my commitment to Food Allergy Action Month I decided to at least check it out.  It was amazing.  All you have to do is complete an information form and the website figures out who your elected officials are.  You choose the actions that you want to support, the website provides you with an email that you can send or edit as you see fit, it figures out which of your elected officials should receive your letter, you click submit and then you sleep better at night knowing you are doing what you can to help people who are living with food allergies (even those who don’t even know it).  It took me about 5 minutes to send emails to congress to support funding for stocking epinephrine in schools and to support funding for food allergy research.  I also signed up to receive an alert whenever there is a new campaign that needs my help.

Thank you for becoming more aware of the symptoms of anaphylaxis, what to do if you see the symptoms, and maybe even urging congress to help protect those who are at risk for anaphylaxis.  Those of us who love someone at risk for a reaction really appreciate it!

Have you been participating in Food Allergy Action Month? What have you done this May to make the world safer for people with food allergies?

 

 

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How We Spent Food Allergy Awareness Week

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So here it is, the Friday of Food Allergy Awareness Week (FAAW), and I have to admit that I’m feeling pretty guilty about my lack of blog posts this week.  It seems like if you have a food allergy blog, you should probably spend FAAW going all out with posts full of facts and interesting tidbits about food allergies and what it’s like to live with them.  And besides the one short (but important) post from earlier this week, I feel like FU FPIES has been pretty quiet this FAAW.

I was driving home from our playdate today and feeling bad about not spending more time on the blog this week, when it occurred to me that instead of throwing a ton of facts at you all week, we have actually been living with food allergies.  E and I have had a great week.  As I reflected on what we’ve been doing while I wasn’t blogging I realized that this is what FAAW is all about.  It’s about our constant awareness of food allergies and, most importantly, it’s about not letting that awareness interfere with living life.

So, here is a recap of what E and I have been up to this FAAW:

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This year FAAW started on Mother’s Day, which was an amazing day for me!  E and I got to spend some quality morning time reading and cooking together!  I know I’ve mentioned before about how much it fills my heart to see E enjoy something that I baked for him (like chocolate chip cookies), but when he gets to cook with me, it’s even better.  I love an opportunity to make a recipe that he can actually help with and taste-test along the way (stay tuned for the recipe – it’s a good one!).  Then we had a wonderful brunch with my mother, father, great aunt, sisters and their families.  It was great to have everyone together for yummy food and a relaxing day.  E had a great time showing off and playing hard with his cousins. I feel so lucky to be his mom.

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Monday was unseasonably hot so we bought our first baby pool and E went for his first dip of the season (actually his first time ever in a baby pool).  This was definitely the cutest swimsuit at the store and I couldn’t help but notice that it was teal and grey (the FPIES awareness ribbon colors).  He loved splashing around and perfecting his frog impression.  We were also happy to share this picture as part of the FPIES Foundation’s #LoveYourFPIESselfie and #BeTheVoice campaigns for FAAW.

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We had some really wonderful playtime at the playground, the play area at the mall, Grandmom’s house, and of course at home.  I love that my little bookworm refused to put down his book even to climb to the top of the slide.

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We capped off the week with purchase of an E-sized chair for the porch and brand new snazzy sneakers.  Luckily this trip home from the shoe store was far less traumatic than when we bought his first pair of sneakers.

Sure, we did a bunch of un-photo-worthy stuff too – running errands, playing with cars and trucks, reading, coloring, and having the occasional impromptu living room dance party.  We did what we could to recognize FAAW by wearing teal and coloring FPIES awareness ribbons, but the truth is that E has no idea he has food allergies.  What  he does know is how to have a really good time and that he has two parents, a large family, and lots of friends who are always looking out for him and will do what they can to keep him safe and allow him to keep having a really good time 🙂 I spend most of my posts writing about how FPIES has made our lives difficult or scary and I try my best to share information with you whenever I can, the whole blog is really about food allergy awareness.  

Today’s post is a reminder that E is still a toddler who is living life to the fullest every day.  When you see his long list of allergens or read my posts or listen to me talk about the stress that can accompanies living with FPIES, it can be hard to believe that we can still have these wonderfully normal and fun moments in our lives.  For me allergy awareness makes these moments even more special and makes me truly treasure each one.  

When I look back at this week, I see numerous possible blog posts, as most of what we do is related to food allergies or is in some way influenced by E’s FPIES, but he is waking up from his nap and I’ve been looking forward to cuddling on the couch with him while we watch Curious George, so those posts will have to wait for another day.  I hope you are having a great week and enjoying life as much as we are, with or without food allergies.

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Why You Should Care About Food Allergy Awareness Week

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What do you want you want most for your child?

I have no data to support this and I am totally going out on a limb, but I think that one of the most frequent answers to that question is often: “I want my child to be happy.”

Unless you are an allergy parent, then your answer is most likely: “I want my child to be safe.”

It isn’t that non-allergy parents don’t want safety for their kids.  Everyone wants their children to be safe and we all take multiple steps every day to keep them that way.  We buy the safest carseats, we teach our children to stay out of the street, to hold our hands in crowded places, to wear bicycle helmets.  For most parents safety is a given.  Of course you want your child to be safe, that goes without saying.

But for allergy parents it’s different. We think about safety all the time.  We say the word “safe” multiple times a day.  Food isn’t just “yummy” or “yucky,” it’s “safe” or “not safe.”  We are always on alert because to us it feels like our children are rarely truly safe.  They are always at risk for having a severe, perhaps life-threatening allergic reaction.  I’m not just talking about FPIES reactions, which can be extremely scary and can land your child in the hospital.  Instead, let’s go worst-case scenario and think about a parent whose child has an IgE allergy.  The kind where peanut dust can cause an anaphylactic reaction that includes the child’s skin breaking out in huge, red, itchy hives, and their throat closing, preventing them from breathing.  This child may die if they aren’t administered epinephrine within seconds.  All this from peanut DUST! These parents don’t ever take their child’s safety for granted.  And the worst part is, it’s not something they can control.  These parents rely on you – the rest of the world – to help keep their children safe.

Food allergies affect 15 million Americans, according to Food Allergy Research and Education (FARE), this is the same number of people who watch Dancing with the Stars, or who work the night shift, or who practice yoga.  That is a lot of people.  One in 13 children has a food allergy.  You probably know 13 children, imagine one with a severe allergy.  Food allergies are real and they are serious – every three minutes someone goes to the ER with a food allergy reaction.  That means that in the time it takes you to read this blog post, someone in the US has had an allergic reaction so severe that they had to go to the hospital.  Because of A FOOD.

And it’s not just peanuts.  Peanuts get a bad reputation because they tend to cause really severe reactions and children are less likely to outgrow peanut allergies.  But a person can be severely allergic to any food. The most common food allergies are to milk, eggs, peanuts, tree nuts, soy, fish, shellfish, and wheat.  But a person can have a severe reaction to a fruit or a vegetable or anything.  Any food can be a poison to a person with food allergies.  And food is everywhere!

This food allergy awareness week, I ask that you become more aware of food.  Look around you.  When you are at home, how much of your time is spent related to food – planning meals, cooking, eating, snacking, cleaning up? When you are out and about notice where the food is – a person drinking a latte passing you on the street, a toddler eating a snack in the stroller while mom goes for a walk, a family picnicking at the playground, a rushed businessman who is shoving the last of his lunch into his mouth and brushing the crumbs off of his hands as he runs into a meeting.

Take some time this week to become aware of where food is.  Food allergy parents are always aware.  The moment they enter a new place they can tell you what every person around them is eating and have completed several calculations to determine the likelihood that their child will come in contact with it, the danger of that contact, and what they would need to do to prevent the contact.  While you are checking playground equipment to make sure some crazy person didn’t hide razor blades on the monkey bars, they are checking the ground for nut shells, or chocolate wrappers, or kids wandering aimlessly around snacking from a tub of Cheerios.  These parents view the world in a way that is so different from you that you can’t even imagine.  I know these things never would have occurred to me before I was thrown into this world.

Once you become more aware, try to do just one thing to help out those with allergies.  Wash your hands after you eat.  Think twice before you pacify your child with a snack in a public place.  Throw away your food trash.  It sounds dramatic, but these small steps really could save someone’s life.  Even though you may not think you know anyone with food allergies, your actions can have a huge impact on someone with allergies.  At a minimum they will lessen the stress of the parents who work so hard to keep their children safe…and happy.

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The FPIES Awareness Ribbon

FPIES Ribbon

Today’s action for Food Allergy Action Month is to change your social media profile picture to FARE’s Teal Ribbon.

I decided to make my action more FPIES-specific and instead changed my Facebook profile picture to the FPIES Awareness Ribbon.  The FPIES ribbon is a twist on the generic Food Allergy Awareness Ribbon, which is solid teal.  The difference, of course, is that the FPIES ribbon has a gray line through it.  This is to symbolize that FPIES is a type of allergy about which there are still many unknowns, i.e., there is a lot of “gray area.”   I really can’t think of a better way to symbolize this frustrating illness!

Please feel free to share the FPIES Awareness ribbon or the Food Allergy Awareness ribbon as your social media profile picture or however you wish.  The more people become aware of food allergies, the safer our children will be.

 

FA Action Month

A nasty cold moved into our house this week and I was not prepared (go figure), so I got a little behind on my Food Allergy Action Month posts.  I know, how sad is that I couldn’t even stick to this for more than one day?  Don’t even talk to me about new year’s resolutions.  Anyway, here’s what you missed:

 May 2
Speak Up with Your Social Reach! Join our Food Allergy Awareness Week Thunderclap
 May 3
Order an Official Food Allergy Awareness T-shirt from MASSCanvas

The Thunderclap is a really cool idea.  It’s an automatic service that will send a message via social media on May 12 at 10am.  If you sign up, it will send the message on your behalf, so that the message goes out at exactly the same time for everyone.  It only works if 500 people sign up.  Right now they aren’t even halfway to the goal, but already have the potential to reach almost 80,000 people.  I hate the idea of giving permission to an app to post on my Facebook page on my behalf, but this is too important.  I strongly encourage you to check it out too:  https://www.thunderclap.it/en/projects/11302-food-allergy-awareness-week.  The message is:

“It’s not a fad.  It’s a potentially life-threatening disease.  Take action to find a cure.  #FoodAllergy Awareness Week” 

Saturday’s action was to buy a food allergy awareness shirt.  There are two designs this year, each designed by someone touched by food allergies.  The first one illustrates the 15 million people with food allergies, thus 15 million reasons to care about food allergies.  The second illustrates the top 8 food allergens and reminds us that there are 15 million reasons to work for a cure and “get food allergies off our plate.”  20% of the proceeds from the shirts go to FARE to support food allergy research, advocacy, and awareness.

 Hap“It’s not a fad. It’s a potentially life-threatening disease. Take action to find a cure. #Foodareness 

Happy Food Allergy Action Month!
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It’s Food Allergy Action Month!

FPIES Ribbon

Food Allergy Research & Education (FARE) has declared the entire month of May as Food Allergy Action Month, which is an extension of Food Allergy Awareness Week, which begins on May 11. The goal is “to go beyond raising awareness in order to inspire action so that we can improve understanding of the disease, advance the search for a cure, create safer environments and help people live well with food allergies.” In celebration of this event FARE has issued a challenge in the form of a calendar. Each day contains an action that you can take to support food allergy awareness, with the goal to do something every day.

I don’t know if I’ll be able to stick with everyday but I will do my best to raise awareness for food allergies in general and relate it to FPIES when I can.  I hope to do this in a series of short and sweet posts, and encourage everyone to check in every day to learn something more about food allergies and FPIES.  I’ll also continue to tell the story of E’s FPIES Journey and share yummy recipes as well as our FPIES victories.

Today’s action is to share FARE’s Food Allergy Awareness Infographic:

And here is an awareness card created by the FPIES Foundation:

I encourage you to share this information with your friends and family and get involved yourself. THANK YOU!

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Join Together for Better Care

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Today is Rare Disease Day, an international event that calls attention to diseases that affect less than 200,000 Americans.  FPIES is one of 6000 rare diseases.  The day is an opportunity for people who usually feel so isolated in their diagnoses to come together and recognize that they are part of a larger community.  It is also about sharing our stories and raising awareness to encourage research and understanding of the diseases and those that live with them.  The video below, that was put together by The National Organization for Rare Disorders (NORD), does a great job of explaining rare diseases and the goals of the day.

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NORD has also organized the Handprints Across America campaign, a space for individuals with rare diseases to share their stories.

Handprints Across America

The best we could do for our Handprints Across American Entry

To be honest, before this year I had never heard of Rare Disease Day and I certainly hadn’t heard of some of the diseases represented.  The FPIES Foundation  and IAFFPE has been publicizing the event and encouraging participation in Handprints Across America.  I was so excited to have a chance to participate in a movement to increase awareness of FPIES and other diseases about which little is known.  I went to the website to print out our flyer and immediately became engrossed in the photos and stories that were already posted.  What a humbling experience. I was suddenly so grateful that E only has FPIES.  I mean, FPIES sucks but there are people (and families) suffering far worse.  It is days like today that remind me to count my blessings and be grateful that these are our biggest problems.

In honor of Rare Disease Day, I finally created an information page about FPIES that I would love for you to visit to learn more about food allergies and FPIES.  But I plan to share information about FPIES with you frequently and will continue to add to the information page.  So today, on Rare Disease Day, I urge you to take a couple of minutes to check out the stories of the other brave patients and their families.  Look into their eyes, allow yourself to connect with them and their struggles, learn about one of the rare diseases, and share what you learn with someone else.   As a caregiver of someone with a rare disease, I want you to know that we appreciate whatever it is you do (and just reading this post counts).  

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On a lighter note, below are some out-takes from our Handprints Across America photo shoot. I admit that we shouldn’t have waited to minutes before bedtime on the day before Rare Disease Day to take our picture, but E is definitely going to have to get better at supporting mommy’s procrastination habit.

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