Rare Diseases Day 2015: Living with a Rare Diagnosis

Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives”. (What is a Rare Disease)

The theme for Rare Disease Day 2015 is, “Living with a rare disease: Day-by-day, hand-in-hand”.  In honor of this, we asked the community to give one word to describe what living with FPIES means.  We received numerous impactful responses, demonstrating our strong solidarity as a community.

How can you get involved? 

1. Download and share Rare Disease Day communication materials! Share your awareness of Rare Disease Day with your online community, utilizing logo’s, banners, badges, and social media profile pictures.

• Global Genes – Global Genes has “I love someone RARE” profile pictures again this year; you can upload your child’s photo for this unique profile picture, or simply use one of their other profile pictures and banners for your social media profile.  Also be sure to share your pictures with us and Global Genes on social media!
• Rare Disease Day -  Rare Disease Day has the official logo and countdown ticker to add to your blog or website as well as posters and banners to show your support of this day.
• The FPIES Foundation – visit our website and Facebook Rare Disease Day Event page to click and share banners, logos, and profile pictures created just for Rare Disease Day awareness of FPIES.

2. Share FPIES awareness materials in your online community – visit our website and Facebook album to share these flyers online. 

3. Share your family story of what living with FPIES means to you. Sharing your story shares awareness, and awareness is key!

• Read and share Inspiring Family Stories.
• Write to us at contact@thefpiesfoundation.org on how to get your story published on our Inspiring Families pages.
• Provide an update to a story we have already published!

4. Distribute Awareness Materials in your local community – at the doctor’s office, at daycare or school, at your playgroup. Download, print and share these flyers in your community: 

5. Start the Conversation!  An awareness conversation does not have to be formal or lengthy. Some great settings include but are not limited to moms’ groups, breastfeeding support groups, new parent education groups, staff meetings (at schools,nutrition clinics, etc). Pick a setting that is meaningful to you and then make a call!

6. Participate in or host an awareness event in your community!

• Support group meeting- get together and share what it is like to share a rare diagnosis. “You are not alone”. 
• Fundraiser event – host a walk, host an FPIES awareness event, initiate a wear jeans at work day fundraiser, or participate in ongoing online fundraisers. 
• Participate in Give Rare Day March 3^rd, a Global Genes Initiative that benefits non-profits.

7. Wear your awareness materials!

• Café Press Foundation gear - “Rare But Real” t-shirts, with thanks for the original design by Crystal Martin, these t-shirts are now available through the Foundation Café Press store.  
• Be Brave Bravelets - Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from the Foundation’s page. With every Bravelets purchase from our page, $10 will be donated to The FPIES Foundation, to advance our cause for education, advocacy, outreach and research.
• Global Genes Ribbon - The Blue Denim Genes Ribbon logo, from Global Genes, has become an internationally recognized awareness symbol for rare and genetic diseases.

8. Rare Disease Week on Capital Hill - participate in your community's legislative events

• NORD encourages individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. - See more at: Rare Diseases Day State House Events 
• Rare Disease Day on Capital Hill with Global Genes

9. Check out Global Genes & Rare Disease Day websites for additional resources!

• Global Genes
• Rare Disease Day 
  

10. Follow our Website News and Events and Social Media for Foundation Activities honoring RDD

• Follow us on Facebook and share awareness materials 
• Follow on Twitter, #Living with FPIES #WRDD15 #Careaboutrare 
• Join our online events for RDD 

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

The FPIES Global Patient Registry: Getting to Know Connect

The FPIES Global Patient Registry Getting to Know CONNECT

Part 3 of 3 in Registry Series

What defines the CONNECT program?

Patient Crossroads' CONNECT program is, “a registry platform, which allows patients around the world to join others in reporting their own experience of disease.”-- From the Patient Crossroads Advocacy Brochure

According to the Patient Crossroads website, “PatientCrossroads is a place where all kinds of people can share and access medical data to hasten the search for cures. Our programs enable anyone—from individual patients to global research organizations—to collect and share disease data in a way that's controlled, transparent and centered on patients' best interests. . .  The CONNECT registry enables disease communities, regardless of size and shape, to collect and share de-identified patient data in a consistent and transparent manner.”

For more, about de-identified data and Patient Crossroads' strict confidentiality policies, read here: https://www.patientcrossroads.com/advocacyfaq.html

What do I need to know about the latest updates to the Connect program?

Recently, participants received the ability to upload genetic testing results and growth charts to the database. It is essential to remember that if you elect to upload any information to the portal, you MUST remove any identifying information from the documents, such as birth date, medical record numbers, name, and so on. Printing out a copy of each electronic document, blacklining identifying information and then re-scanning to the computer for upload may be a potential way to approach this process. Uploading information is optional and does not affect participation in the surveys. For any questions about this process, please contact us at contact@thefpiesfoundation.org. For more about additional updates from CONNECT, please visit: https://www.patientcrossroads.com/

What other organizations utilize the registry process through patient crossroads CONNECT program?

◦     The Alzheimer's Association

◦     The American Cancer Society

◦     Parent Project Muscular Dystrophy

◦     Government Organizations: NIH Office of Rare Diseases Research and RD-Connect (FP7 European Union Programme)

For more, read here: https://www.patientcrossroads.com/advocacy-research-clients.html and here: https://www.patientcrossroads.com/industry-government-clients.html

What will be coming up in the future?

◦     Over the next year, regular survey releases will include FPIES-specific, IRB-backed and “research-minded” surveys in combination with surveys targeting general health topics. We will further develop a strong foundation of data, impact existing and future research, and strengthen the collective voice of the FPIES community.

◦     The ability to become aware of clinical trials or other studies, posted in the portal by researchers or other medical industry professionals

How can I register today?

1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page

2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”

3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!

4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES

5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!

6.      For additional support, contact us at contact@thefpiesfoundation.org

Additional Resources:

•  http://www.ncbi.nlm.nih.gov/books/NBK49448/
•  www.patientcrossroads.com
• http://www.hopkinsmedicine.org/institutional_review_board/hipaa_research/de_identified_data.html

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

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

The FPIES Global Registry: Getting to Know the Patient Registry

The FPIES Global Registry Getting to Know the Patient Registry

Part 2 of 3 in Registry Series

What is a Patient Registry?

Also referred to as a “disease registry” or “clinical registry,” a Patient Registry is a program that collects and stores data related to health information for a specific purpose and in an organized and uniform manner.

In our case, this purpose is to use collected information to further clarify facets of FPIES presentation, diagnosis, treatment and management, and its impact on the whole individual, by means of:

·         Further defining symptom presentation

·         Examining potential risk factors

·         Reviewing quality of life and psychosocial issues, 

·         Investigating co-occurrence of other conditions,

·         Exploring treatment and management approaches currently in use

The term “patient registry” also refers to the records that are then created as a result of the processes used to collect and store data. (for more, see: http://www.ncbi.nlm.nih.gov/books/NBK49448/)

A patient registry must carefully observe confidentiality. In The FPIES Global Patient Registry , patient confidentiality is of utmost importance. The platform for the registry is the CONNECT program from Patient Crossroads, a platform designed for use by rare disease organizations to create patient registries in order to facilitate awareness to the various facets involved in each diagnosis. Key points:

·         Data submitted to the registry becomes de-identified – any and all identifying characteristics (name, email, etc) are unable to be associated with data by registry and portal participants

·         You can choose the level of contact you have with CONNECT and registry partners, including the decision to opt out of any contact, without your decision impacting participation in surveys

·         Data is so secure that the NIH actually houses its own GRDR through Patient Crossroads.

For more, read here: https://www.patientcrossroads.com/security-privacy.html

What can my family gain from joining the patient registry?

◦     Participation in surveys that will serve to bolster information in the registry and may be used for research

◦     A broader understanding about the rare disease community to which you belong by viewing the information compiled from the surveys offered--- information is able to be viewed as soon as each completed survey is submitted!

◦     The ability to review the collective registry's information with the patient's medical team in order to potentially enhance the quality of care

◦     To impact the patient-family-physician relationship through the sharing of information for individualized care of the child

◦     Free access to surveys in a secured patient database registry program.

What does my child's medical team gain by registering for the portal?

◦     A potentially better understanding of the current trends in the affected patient community

◦     Knowledge of current clinical studies for FPIES that researchers may post in the data portal

◦     Ability to impact management strategies and diagnostic considerations, in terms of individualized care and the identification and consideration for co-occurrence of related disorders.

◦     Ability to impact the patient-family-physician relationship through the sharing of information

◦     Free access to view de-identified patient data from the Connect program, including the FPIES Global Patient Registry which houses data from over 300 participants at this time

What information can be found in the registry?

Surveys will contain a variety of FPIES-specific and general patient history questions. General questions will mainly originate from the question library of Patient Crossroads, a compilation of registry questions already vetted and approved for use in any of the various registries in the Patient Crossroads database, and also through the NIH's GRDR, for the rare diseases' collective voice. General questions will focus on a variety of patient history topics, including birth history, quality of life, and others, providing a foundation for more specific FPIES information in later surveys.

FPIES-specific questions will be engineered by the FPIES Foundation's Medical Advisory Board with support from our Executive Board. These will investigate aspects related to presentation and diagnosis, daily and emergency management strategies, and clues for potential treatment options possessing more universal effectiveness.

These questions will then be submitted for review by an IRB (institutional review board), examining ethical considerations, evidence of informed consent, and so on, ensuring that the rights of participants are considered and upheld. Once approved by the IRB, the questions will receive final approval from Patient Crossroads and be entered into their question library. The FPIES-specific survey will at that time be posted to the registry for participants to complete as they are able.

There is no limit to the amount of general surveys and FPIES-specific surveys that can be posted for participant completion and we intend to post multiple surveys over time, keeping with trends in the existing research and those as observed in the patient community.

Both medical professionals and registered participants can view de-identified medical data from the completed CONNECT FPIES registry surveys, compiled in easy-to-read charts and graphs.

Why do some surveys seem to feature content not necessarily specific to FPIES?

The FPIES Global Patient Registry is set up as an on-going program, and will be collecting information over time.

Much like the food journal that many families use to monitor how their children are tolerating a new food during food trials, the registry will also track a variety of topics in order to determine any existing patterns among the general patient population diagnosed with FPIES. By including a combination of general and specific surveys, a “wide net” is cast, allowing for a broader view of each participant's experience and background, potentially revealing previously unseen significance in certain factors or patterns.

What is the cost?

◦     Registry participants do not pay anything for their participation or in order to view the data or information posted by researchers and industry professionals

◦     Medical professionals and researchers can register to access the data portal at no cost

◦     Specialized FPIES-specific surveys, upon approval by The FPIES Foundation's esteemed Medical Advisory Board, will be submitted to an IRB for review prior to being posted on the registry for participants to complete. There is a cost for IRB review and those costs will be absorbed by The FPIES Foundation as part of our research initiatives.

How can I register today?

1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page

2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”

3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!

4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES

5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!

For additional support, contact us at contact@thefpiesfoundation.org

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroadsprivacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

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

The FPIES Global Patient Registry: An Introduction and Overview

The FPIES Global Patient Registry An Introduction and Overview

Part 1 of 3 in a Registry Series

In November 2013, we at The FPIES Foundation presented the first-of-its-kind FPIES Global Patient Registry, via the Patient Crossroads CONNECT program.

Some Key Terms:

·         Patient Registry: Also referred to as a “disease registry” or “clinical registry,” a Patient Registry is a program that collects and stores data related to health information for a specific purpose and in an organized and uniform manner.

·         De-identified Data: Information that is stripped of any and all identifying characteristics (name, email, etc) so that those viewing the data cannot see any connection to the participant from whom it came

·         Institutional Review Board (IRB): this may also be referred to as an ethics review board. It is put into place in order to approve, monitor and review research that involves people-- it exists in order to protect research participants (http://www.medterms.com/script/main/art.asp?articlekey=22413)

There are two essential parts to the registry:

·         The patient registry, which houses surveys (general questions and FPIES-specific questions) for registered participants to complete.

◦General Surveys will mainly utilize questions from the Patient Crossroads question library, a library of previously IRB-approved questions for use by any of the participating registry programs utilizing the CONNECT platform

◦     FPIES-Specific Surveys will utilize questions engineered by The FPIES Foundation's medical advisory board, with support from the Executive Board. Those questions, once internally approved, will then be sent for approval by an IRB (Institutional Review Board) before being submitted to the Patient Crossroads CONNECT program for final approval and  survey publication on the FPIES Global Patient Registry.

·         The data portal, a newly released component of the CONNECT program, is for use by medical professionals, researchers, and other industry professionals (such as pharmaceutical companies). The portal is free for these professionals to register and allows them to view the de-identified, anonymous information entered into the patient registry by registry participants

How does the FPIES Global Patient Registry work?

The FPIES Global Patient Registry is set up through Patient Crossroads' Connect program-- a program offering platforms for rare disease organizations to create registries for their individual patient populations and data portals to display de-identified information from these registries. Registered participants, as well as registered medical, research and pharmaceutical professionals, can then view the information in a secured location. The registry is intended to present a “big picture” of FPIES and all of the issues that may or may not affect each individual patient. It aims to further research endeavors, examine improved treatments and achieve a better understanding of this diagnosis.

An important privacy feature of a research registry is the collection of data with de-identified information

De-identified information means that when you submit information into any of the surveys or the registration process of the Connect database, the information will not be able to be attached to you or your child's identifying characteristics. The information will be stored by means of a code, accessible only to Patient Crossroads staff. Even if you select the option to allow researchers to contact you, the contacting is done through Patient Crossroads. The researcher contacting you still does not have any identifying information about you, your child or even your contact information. All of those are protected, making this database secure and confidential. In fact, its privacy standards are so high, the Patient Crossroads registry system is utilized by NIH (the National Institute of  Health) to power its Global Rare Diseases Patient Registry and Data Repository (GRDR)!

How can I register today?

1.      Go to the FPIES Foundation's home page (www.fpiesfoundation.org) and click on the blue “Connect” logo on the left side of the page

2.      You will arrive at the home page for The FPIES Foundation Global Registry. Click the blue box that says “Click to Register Now!”

3.      Complete the “Consent and Registration” section. Click “Register” and you are ready to go!

4.      On your dashboard page, you will be able to select surveys to complete at your convenience. View the results as you complete each one and learn more about the FPIES community as you CONNECT!! Be sure to register each member of your family diagnosed with FPIES

5.      For PORTAL Registration, simply go to the patient crossroads homepage at www.patientcrossroads.com and click on the button that says “log in/sign up” and follow the prompts!

6.      For additional support, contact us at contact@thefpiesfoundation.org

	Patient Registry	Data Portal
What information can be viewed?	De-identified data from the FPIES Global Patient Registry	De-identified data from the FPIES Global Patient Registry
Who can register?	Individuals diagnosed with FPIES can be registered by their guardians to be survey participants	Medical professionals, researchers, industry professionals
How is my information protected?	All information submitted by participants is de-identified-- this means that all identifying characteristics (name, contact info, etc) are removed from the information in the registry. In fact, the privacy standards are so high, the Patient Crossroads registry system is utilized by NIH (the National Institute of  Health) to power its Global Rare Diseases Patient Registry and Data Repository (GRDR)!	·         All information submitted by participants is de-identified ·         If data portal participants wish to contact registry participants, Patient Crossroads does not disclose any information to these portal participants, but directs the communication to the registry participant without revealing any identifying info in the process. ·         Once contacted, it is the choice of the participant whether or not to reveal any information to the individual contacting them.
Why would someone contact me?	If you select the option to be contacted (this is part of the registration page-- you may opt in or opt out without your decision impacting your ability to participate in the registry)you may be contacted in regards to participation in clinical trials

For more information and FAQ about the Patient Crossroads CONNECT program, go to: https://connect.patientcrossroads.org/en/home/frequently-asked-questions.html

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

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

Rare Diseases Day Awareness Success!

Food Protein Induced Enterocolitis Syndrome (FPIES) is a recognized rare diagnosis - globally.  From Rare Diseases Day, "A rare disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time, and rare in Europe when it affects fewer than 1 in 2000".

"Alone we are rare, together we are strong" speaks volumes for this rare allergy.  As we look ahead to Food Allergy Awareness Week - a time of allergy communities, families living with allergies, and medical providers work together to bring increased awareness to food allergies, while raising awareness to this rare type of food allergy, we want to thank all of YOU for the success of awareness raised during Rare Diseases Day! 

"Join Together for Better Care" was the international theme for 2014 Rare Diseases Day. 

The FPIES Community joined together and got involved in several ways: 

• You shared how you care! The FPIES Community shared how they care, in our social media pages – these were compiled in a blog post. 

• You read and shared "Caring for the Caregiver" by The FPIES Foundation guest blogger, Dr.Nichole Huff. 

• You raised & joined hands!  Families and friends printed, colored, and created photos with Rare Diseases Day themes. Honoring the day with photo submissions on our Facebook page for increased awareness of this rare food allergic syndrome “looks” like.  You can see several of them on our Kids in Action page!  Others submitted directly to Rare Diseases Day 

• You raised awareness in social media - changing profile pictures to honor the day with Rare Diseases Day USA handprints logo or I Love Someone RARE Global Genes customized logo, and sharing the Foundation Rare Diseases Day banner (pictured below), Twitter messages (link) about honoring the day and sharing photos, several blog posts written and shared. 

• You shared your story – FPIES Foundation Inspiring Families page grew with the latest submissions while others submitted directly to Rare Diseases Day: 
• My Son’s Journey with FPIES 
• FPIES from the UK
• Our Little Man and FPIES 

• The FPIES Foundation is honored to be listed among the rare diseases advocacy groups on the Friends of Rare Diseases Day page. 

• Participation for rare diseases like FPIES during a Rare Diseases Day chat on Twitter "Conquering Rare Diseases", a tweetchat with ABC News' Dr.Richard Besserwith.

•  Maureen Gantt, a parent of a child with FPIES even involved her entire class!, "...on this [RDD] day we researched what it means to have a rare disease, and wrote a paragraph about it, and then they each drew the hand logo on their poster. Then their job was to take their poster home and read their paragraph to their families!!"  Thank you Maureen! 

• The FPIES Foundation was honored with several Rare Diseases Day fundraisers for FPIES awareness with donations to benefit the mission of The FPIES Foundation.  Thank you donors!! 

• The FPIES Foundation Co-Director Amanda LeFew was interviewed for this two-part series in Psychology Today: "What You Can Do Today to Stop Misophonia Suffering" and "What You Can Do to Stop Miso Suffering Part II"

• The FPIES Foundation is a partner organization with Rare Diseases Day and our events were listed on their events page, for increased awareness to this rare food allergy.   

• Through our Foundation Alliance with Global Genes, "Connect with The FPIES Foundation for Rare Diseases Day Events" was published on their website, bringing FPIES further global recognition.

One of the biggest strengths of the FPIES community is the support and compassion shared by its members.  Your involvement in Rare Diseases Day once more upheld these values and our community's dedication to one another.  Truly, as we move ahead to Food Allergy Awareness Week in May, we will continue to be a community that is not only rare in diagnosis, but also rare in it's profound advocacy, empathy and commitment to bettering the lives of those affected by FPIES, each and every day. 

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

FPIES: Caring for the Caregiver

FPIES: Caring for the Caregiver

Nichole L. Huff, Ph.D., CFLE

                Recently I read an article by the Family CaregivingAlliance¹ on caregiver stress.  As an introduction to the topic, the author compared the need to reduce caregiver stress to the safety rules given just before takeoff on an airplane—the ones that instruct you to place your oxygen mask on first before trying to help a child or dependent in the event of an emergency.

                Although it was a simple analogy, I couldn’t help but connect its message to FPIES caregiving: We can’t help someone else survive unless we first take time to help ourselves.  I could fully relate.  As the parent of a child with FPIES, I can remember moments at the beginning of our journey where it felt like I was fighting to breathe.  Restless nights when my husband and I would forego sleep so that we could watch our son in the event of a life-threatening delayed reaction.  We spent much of our son’s infant and toddler years walking on eggshells—fearfully tiptoeing around life instead of living it.

At the time, I wouldn’t have considered my husband or me to be caregivers.  But as we approach Rare Diseases Day, of which FPIES makes the registry, I realize that’s exactly what FPIES parents are—we are caregivers.  We provide care for our children with FPIES so that they can lead healthy, safe, and thriving lives despite their special dietary needs. 

In the United States, a disease or disorder is defined as “rare” when it affects fewer than 200,000 Americans at any given time. ²  Sometimes being rare is a good thing—like when you have a special talent or skill that sets you apart.  Other times, however, being “rare” can make you feel alone, which adds to your caregiving stress.  When my son was first diagnosed with FPIES, I searched for other parents with whom to connect.  I so desperately wanted answers, hope, and to find someone who could relate to our situation.  Thankfully, organizations like the FPIES Foundation and online support groups for parents of children with FPIES have helped me to see that while FPIES is rare, we are not alone in our battle.

As social awareness increases for children with food allergies, so does research on the effects of allergy management on a family’s quality of life.  According to researchers, areas of family life affected by allergy management include family activities (e.g., restaurant meals, social activities, childcare, vacation), decisions regarding schooling, time needed for meal preparation, health and general safety concerns for the allergic child, and parental emotional issues (e.g., anxiety or depression directly related to managing the child’s allergy).³  To combat the ill-effects of caregiver stress, we need to be as mindful to care for ourselves as we are to care for our children with FPIES.

                To be an effective caregiver, don’t forget to put on your oxygen mask first.  While you strive to provide a safe, healthy, and loving environment for your child with FPIES, chances are you’re putting your physical, emotional, and social needs to the wayside.  A good rule of thumb?  Work towards balance in these areas.

  

Physical

• How are you caring for yourself physically?  Are you getting enough rest?  Are you making time to exercise?  Are you as worried about your diet as you are your child’s?  How do you relax?

• When you’re physically exhausted, you not only wear down your immune system, but your likelihood of developing depression or anxiety increases.  Examine your weekly routine and make sure you’re getting the sleep, nutrients, and downtime your body and mind need.  Find a gym that offers childcare.  Once a month schedule a spa treatment or a round of golf.  Stroll your kids around the neighborhood or a local park.  Examine your diet.  Is it balanced?  Rely on food for fuel, not for comfort.

Emotional

• Side effects of stress, including depression and anxiety, can wreak havoc on our emotional states.  If you find yourself short-tempered, easily irritated, or crying more often than usual—or if your emotions ever interfere with everyday tasks such as socializing or driving—then chances are, your stress-levels are too high.

• Depression and anxiety are real—and they can cripple our ability to function in everyday situations.  They result from chemical imbalances in the brain and body, often as a direct effect of stress.  If you’re concerned that you may be suffering from depression or anxiety, talk to a therapist or a physician about treatment options.  Seeking help isn’t a sign of weakness.  But rather, taking care of your emotional health is vital to your happiness and your ability to keep stress at bay.

Social

• Do you make time for fun?  (Or should I ask: Do you remember what fun is?)  Do you spend time with your friends apart from your kids?  Do you schedule play dates with other parents and children (or do you shy away from situations that may involve food)? Do you and you partner make time for each other?

• As a busy parent, spending time with other adults often falls off our radar.  Especially for parents of children with FPIES, who also have to worry about educating sitters, childcare providers, even family members, about safely caring for our children.  If you haven’t already, find trustworthy childcare.  Whether you build in a once-a-week coffee date, a monthly book club, a Zumba class, or a standing date night, make time to socialize with other adults. 

Remember, caring for yourself (the caregiver) is essential to your overall well-being.  The more balanced you are physically, emotionally, and socially, the better able you are to love and care for your child, and to tend to his or her rare FPIES needs.

  

References:

¹Family Caregiving Alliance. Taking Care of YOU: Self-Care for Family Caregivers. Available:

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847

²Rare Diseases Day is February 28, 2014.  Learn more at: http://www.rarediseaseday.org 

³Cohen, B. L., Noone, S., Muñoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159–1163.

As the parent of a son with FPIES, Dr. Nichole Huff is an assistant professor and Extension Specialist at North Carolina State University.  Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy.  She is a Certified Family Life Educator (CFLE) with the National Council on Family Relations.  Her areas of research include child development, parent-child communication, and bio-psycho-social health.  Dr. Huff also maintains a parenting blog at http://soapboxmommy.com/