Today, on Global FPIES Day, at The FPIES Foundation, we are
proud announce the official proclamation for the day.
The FPIES Foundation is dedicated to overcoming the
challenges of FPIES by offering tools for education, support, and advocacy to
empower families and the medical community. Collaboration among medical
professionals, families and affected patients, and global partners allows for
furthering awareness, promoting advocacy, and fueling future research,
worldwide.
Food Protein-Induced Enterocolitis Syndrome, FPIES, is a type of food allergy
affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include
profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe
lethargy, change in body temperature and blood pressure. Unlike typical food
allergies, symptoms may not be immediate and do not show up on standard allergy
tests. Furthermore, a negative allergy evaluation may delay the diagnosis and
take the focus off the causative food. Nonetheless, FPIES can present with
severe symptoms following ingestion of a food trigger.
For individuals affected by FPIES, significant delay in diagnosis can be
common, which may lead to increased acute episodes and compromised quality of
life. Lack of conclusive diagnostic testing and diagnosis management strategies
can impact the standard of care received by these individuals. Lack of
awareness among medical professionals can affect appropriate
diagnosis and follow-up care. In honor of Global FPIES Day, we aim to raise
greater awareness to this often misunderstood diagnosis. At The FPIES
Foundation, we not only recognize the need for research to help future children
and their families, but we also recognize the need to help our families and
medical professionals now by providing education, advocacy and support
resources, online and in our global community.
On Global FPIES Day, we continue to further awareness through providing
resources, such as printable packets for medical provider, school/caregiver,
and patient education, respectively. Flyers and printable informational
materials are provided for promoting community understanding. Interactive
activities, such as creating “Be the Voice” social media frames and taking part
in “Find Your Fourteen,” foster advocacy among patients, families, medical providers
and our partners. The website,
www.fpiesday.com, provides additional resources and tools
to further the mission of Global FPIES Day.
Throughout the year, we at The FPIES Foundation uphold the ideals and promote
the mission of Global FPIES Day. We continue to invest our resources in
outreach worldwide, for medical providers and families alike-- a provider
database, bi-lingual resources, printable forms and documents, and other tools
to empower our community to support individuals affected by FPIES. We expand
our global partnerships through project collaborations and resource sharing.
Our FPIES Global Patient Registry provides information on current trends
reported by FPIES families and is made available to researchers in the field,
fueling future novel scientific endeavors. Our dynamic and diverse medical
advisory board provides multidisciplinary support to our ongoing initiatives.
Imagine parents holding their sick child in the dark night, scared and alone,
not knowing where to turn for help. Envision the light that knowledge and the
insight of an informed global community can bring to these dark nights, to
these children and their families. We invite families, medical providers and
partners worldwide to strive toward improved patient and provider education,
community support and advocacy for all affected individuals and their families.
NOW, THEREFORE, we, The FPIES Foundation, a nationally recognized 501c3
non-profit organization and sponsor of this day, do hereby proclaim October 14,
2014, as Global FPIES Day. We invite the global community at large to observe
this day with programs, ceremonies, resources and activities that promote
education, support, advocacy and research for FPIES (Food Protein-Induced
Enterocolitis Syndrome) worldwide.
This post was written by the Executive Board of The FPIES Foundation
