In recognition of National Eosinophil Awareness Week (NEAW), Feeding Matters welcomes guest contributor Mary Jo Strobel, executive director of American Partnership for Eosinophilic Disorders (APFED). A non-profit patient advocacy organization dedicated to patients and their families coping with eosinophil-associated diseases, APFED provides education and support services and funds peer-reviewed research through its Hope on the Horizon Research program. Mary Jo lives in Northern Virginia with her husband and two children. Her niece suffers from eosinophilic esophagitis.
This year, National Eosinophil Awareness Week (NEAW) is May 20-26. During this special week our patient community comes together to raise awareness of eosinophil-associated diseases and educate others about the impact of these conditions. Since being officially recognized by Congress in 2007, thanks to APFED’s advocacy efforts, NEAW has helped bring about a greater understanding of these rare, chronic, and emerging diseases.
Eosinophils are a type of white blood cell that play an important part of our immune system, helping us to fight off certain types of infections, such as parasites. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections caused by parasites, eosinophil-associated gastrointestinal disorders, and other problems. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.
Eosinophilic gastrointestinal disorders (EGIDs) are distinct diseases affecting areas of the gastrointestinal tract: the esophagus, stomach, and small and/or large intestine. EGIDs are often driven by food triggers.
Symptoms of EGID may vary from one person to the next and may differ depending on age. Infants and toddlers often refuse their food or have trouble growing properly. School-age children may have recurring abdominal pain, trouble swallowing, or vomiting. Teens and adults will often experience difficulty swallowing or painful swallowing. Food may become stuck in their esophagus (impaction), causing a medical emergency.
Currently, there is no FDA-approved therapy to treat EGIDs. Symptoms are controlled by dietary restrictions and/or corticosteroids that are used off-label. Some patients have a severely restricted diet or must avoid the vast majority of foods and instead receive all of their nutrition from an elemental formula. Some patients are able to drink the formula, while others need a feeding tube.
Follow APFED all week as we continue to raise awareness for eosinophil-associated diseases and use hashtag #NEAW2018. We will also be posting giveaway offers and spearheading an action-oriented awareness campaigns on Facebook. Be sure to follow along!
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If you have a child with pediatric feeding disorder, feeling overwhelmed is not unusual. Feeding Matters is committed to providing parents with the support and resources they need to deliver the best care to their children, including our parent-to-parent coaching program and on-demand knowledge center.
For more information or resources on eosinophil-associated diseases and the American Partnership for Eosinophilic Disorders, please visit apfed.org.