I Know Now...

As May began, the FPIES Foundation initiated the Twitter campaign #IKNOWNOWFPIES in honor of Food Allergy Awareness Month. We asked FPIES families to tell us what they know now that they didn't know when their child was diagnosed.

From the first “I know now” post – “I didn’t know that you could have a delayed response to an allergen. I know now.” –  to the final tweet of the campaign, we shared what parents of FPIES children have learned.

They now know the mechanics of food; that small traces of food could send a child into shock, that soy, rice, and corn are ubiquitous in our processed foods, how to be creative with few ingredients, what quinoa is and how versatile coconut can be.  They have learned that cross contamination can be dangerous, that “proteins” can mean something other than meat and beans, that a child can react to proteins in a mother’s diet through breast milk, and exactly how to read labels on foods.

They now know the confusion surrounding FPIES; that it can look like a repeated virus to many doctors, that often people don’t even know that this kind of food allergy exists, that they must be a strong advocate for their child, and they learned the power of motherly instinct.

They now know their own strength; that being an advocate for their child taught them what courage, endurance, and love truly are.   They now know there are networks of people whom they have never met, and may never meet, who all care about their child and ALL children, enough to dedicate their lives to FPIES awareness and research.

These parents are admirable and inspiring! Thanks to the platform provided by Food Asthma & Allergy Month, the FPIES Foundation has shared the education of FPIES families with the world at large. This month, families have had newspaper articles written about their struggles, more medical personnel are at least aware that FPIES exists, and many new families have quickly and easily found the support and encouragement of other FPIES families upon their shocking diagnosis.

This is amazing, and it was all thanks to you! You shared our tweets, our Facebook posts, our blog posts, and our literature. 

You spread the word – and you helped children across the nation receive quicker diagnoses and support. You prevented unnecessary medical tests thanks to doctors recognizing the symptoms of this disease.

You helped make children’s lives better.

Our work is not finished. The FPIES Foundation will not cease in its efforts to educate as many people as possible about FPIES and help families who manage this disease! But this was an excellent leap forward, and we at the Foundation want to thank you all for your efforts this month.

We hope you will continue to click “share” every chance you get. We hope you will continue to tell people the story of your child – or your friends’ child – and their struggle with Food Proteins. We hope you will continue to support these courageous children and their phenomenal parents. You never know who you know that will need this information to help their child.

We started May with “I Know Now”…and we end the month by saying “WE Know Now”!

THANK YOU.

(And keep an eye out for our new awareness campaigns coming in the next few months!)

Post contributed by The FPIES Foundation volunteer Carrie Summers. Carrie also blogs about her life with FPIES, Fructose Malabsorption, Real Food, and motherhood at  www.CradleRockingMama.com  

Start The Conversation for FPIES Awareness!

There are many ways to raise awareness. When explaining FPIES to your child's pediatrician, you are raising awareness. When you sit down with your child's daycare provider to explain safety precautions necessary to keep your child as free from reactions during the day, you are raising awareness. The setting doesn't need to be elaborate, formal or encompass a large crowd. Let's think of it as simple, let's think of it as "Starting the Conversation," a way to communicate needed information in everyday settings. Setting up a conversation is easy and straightforward when you utilize the tools provided on our website, available at  http://fpiesfoundation.org/start-the-conversation/

Let's consider some examples to help get you started! The possibilities are of course endless, but three key settings that you may consider for your awareness conversation are parent support groups, educational staff groups/meetings, and medical professional meetings

Sharon's Story:
Sharon wants to raise awareness for FPIES among her breastfeeding support community. She is successfully nursing her son on an elimination diet and other mothers in her support group seem interested in the changes they have seen in her son since she began her diet. 

She formatted the "Sample Awareness Letter" to tell her family's unique story and customized it to speak to the values of her breastfeeding support group. Upon receiving the letter, the breastfeeding support group leader then met with Sharon and they set up a time for Sharon to speak to the other families about FPIES and about how they have learned to cope with and manage their son's FPIES. She distributed awareness flyers at the support group the week before the conversation was scheduled. 

At the meeting the following week, she distributed "FPIES at a Glance" and the "FAQ Sampler" when presenting her family's FPIES experience to the group. Group members received information from her story but also received Medical Advisory Board-approved/written FPIES facts from the supporting documents.

Nathan's Story:
Nathan wants to raise awareness for FPIES among the teachers at his daughter's future preschool. He used the Sample Awareness Letter as a starting point for a conversation with the preschool's director, at which he inquired about scheduling a time to speak with the school's staff at a staff meeting about FPIES and how to help the school environment/activities to be safe for his daughter. 

The director agreed to have Nathan speak to teachers at the next staff meeting. She also requested that he provide some educational documents in advance, so the teachers could read them and be prepared with any necessary questions at the meeting. Nathan provided copies of the "FPIES at a Glance" and "Q&A Sampler" to the director, who distributed them to teachers. He also gave the director some Awareness flyers; the director then distributed the flyers with the meeting agenda for that staff meeting. 

At the staff meeting, teachers were already aware of FPIES and better able to ask pertinent questions about how they could best help Nathan's daughter to be successful within the schools activities and curriculum. Because the teachers were already prepared, some problem solving about potential risk factors could actually be discussed at the meeting, rather than waiting for parent teacher conferences to begin.

Matilda's Story:
Matilda wants to help her son's pediatrician and the doctor's office staff to have a better understanding of FPIES. Some staff members have expressed confusion about the diagnosis in the past and a desire to learn more about what this diagnosis entails. 

At her son's well-child visit, Matilda discussed the potential of speaking with the office staff about FPIES and providing educational materials for staff members to keep on hand, to help lessen staff confusion. She used the Sample Awareness Letter as a starting point for this conversation and brought along the educational materials for the pediatrician to review. The pediatrician thought that this was a wonderful idea and scheduled a time slot for Matilda to speak to the staff at the end of the next scheduled staff meeting. 

At the meeting, Matilda distributed packets to each of the staff members-- each packet contained an awareness flyer, a copy of her son's FPIES story, and educational resources ("FPIES at a Glance" and "Q&A Sampler"). She also included a list of applicable links from The FPIES Foundation's website, as well as a copy of the most recent medical journal article offering an overview of FPIES. She found the article by searching on The Foundation's medical journal article page. 

At future doctor's appointments, Matilda felt that the staff had a better understanding of FPIES and how it applied to her son's care. She felt strongly that it improved his quality of care and hoped that it also alerted the medical staff to signs and symptoms of FPIES that they may see in future patients.

Get Started TODAY!

These examples are just a start--- there are opportunities for raising awareness all around us. By taking these opportunities to raise awareness, we are not only helping to find support for our own families but also we are helping to increase the potential for support for future families. Our road with FPIES does not have to end at our front doors--- let's reach out and start spreading awareness today!

To download copies of awareness flyers, FPIES At a Glance, Sample Q&A and other tools to print and share, or more information, please visit our Start the Conversation webpage; or contact us at contact@thefpiesfoundation.org for any assistance you may need! We are happy to help you get started!  

This post was written by the Executive Board of The FPIES Foundation 

The FPIES Foundation Honors FAAW: Awareness Is Action!

Awareness is Action, and YOU help pave the path!

At The FPIES Foundation, we recognize and stress the importance of awareness for this rare disorder. Because FPIES is rare, families can experience difficulty finding medical providers that are familiar with this diagnosis, and can receive poor advice from well-meaning friends and family due to lack of knowledge. Awareness can help to bridge this gap. How?

When someone is AWARE of FPIES…

• They will ENCOURAGE medical providers to “think outside the box” for a diagnosis, and ENCOURAGE parents to keep trying to find the answers when they are certain their current diagnosis is incorrect.

• They will exhibit COMPASSION for families who struggle with food allergies – whether immediate or delayed onset.

• They will want to EDUCATE everyone they encounter about the realities of FPIES and food allergies to clear up confusion and spread AWARENESS.

• They will be turned toward INNOVATION in creating new treatments, new tests, new recipes, new school safety protocols, new coping skills, and new diagnostic protocols for this rare and baffling disease.

• They will feel EMPATHY for medical practitioners who are struggling to adjust their knowledge base and general diagnostic approach to including a disease so difficult to pinpoint or solidly identify, and EMPATHY for parents who have struggled to find help for their child.

• They will have EMPOWERMENT to confidently move forward in the face of uncertainty, with both the medical establishment and the world at large.

• They will have their INTEGRITY reinforced! No longer will they be the lone voice stating there is something wrong with their child. Knowing about FPIES means their instincts will have been proven correct, and they will feel whole and complete again.

• They will grow in their RESPECT: for the caregivers, for the doctors, and especially for the children.

• They will have INSPIRATION to seek help, push for answers, support others, and share knowledge.

All of this combines to create a person, newly aware of FPIES, who will now walk confidently down the path of ADVOCACY for these precious children who courageously walk the path of FPIES with good humor and joy.

When one is AWARE, one cannot help but to take ACTION.

That is why the FPIES Foundation was created. Awareness is the cornerstone to building a foundation of active support for FPIES children. Together with families and medical professionals we will continue to make changes today to keep building this lasting foundation for tomorrow

We offer resources for families and medical practitioners seeking answers about FPIES so we can help support YOU as you support your child. We hope you will avail yourself of these resources; to become AWARE so you can ACT!

• Read and share About FPIES
• Print and share FPIES Awareness Flyers
• Read and share Inspiring family stories, and consider submitting your own! 
• Read how you can Get Involved 
• Follow and share Food Allergy Awareness Week 2013 Activities 

The FPIES Foundation is participating in Food Allergy Awareness Week (FAAW), May 12-18, 2013 with awareness campaigns through our website, social media and other online tools. We hope you will join us in spreading AWARENESS about FPIES!

Post contributed by The FPIES Foundation volunteer Carrie Summers. Carrie also blogs about her life with FPIES, Fructose Malabsorption, Real Food, and motherhood at  www.CradleRockingMama.com