(Atlanta, GA)— This week, the American Partnership for Eosinophilic Disorders (APFED) celebrates the 9th Annual National Eosinophil Awareness Week. National Eosinophil Awareness Week was established in 2007 by APFED, a patient and family advocacy and education organization, to support those who have eosinophil-associated diseases (EADs) and to raise the level of education and awareness in the public and the medical community about these conditions.
Eosinophil-associated diseases are real, they are rare, and they are growing in prevalence. We observe National Eosinophil Awareness Week acknowledging those who live every day with the concern that their exposure to certain triggers (e.g., food and airborne allergens) may have the potential to cause a reaction.
Imagine having a rare disease that makes your esophagus swell and narrow, preventing you from eating any food. Or one that causes inflammation and damage to your skin, lungs, heart, or nervous system. Imagine having a disease that causes bone pain, muscle pain, and thickened, puckered skin and not being able to find a doctor who is able to help.
Eosinophils (ee-oh-sin-oh-fil) are a type of white blood cell and an important part of the immune system as they help fight off certain types of infections and parasites. 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. With an EAD, cells respond to triggers by releasing toxins into the affected area.
The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDS) that affect the gastrointestinal tract and often render the patient unable to tolerate certain food proteins. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube), and/or steroid treatments.
“Communities across the U.S. are affected by eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “During National Eosinophil Awareness Week, we are pushing to ensure that every family affected by these conditions has access to the care, support and resources that they need. This event compels the research community, health care providers, caregivers, and people living with EADs to join together to heighten awareness and address the issues that this community faces.”
Due to the lack of information or awareness of these diseases, patients may suffer for years trying to obtain an accurate diagnosis and appropriate treatment. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments.
“Research and education are two of the best tools to help people living with these disorders,” shares APFED’s President Dr. Wendy Book. “Educating the public and the medical community can reduce delays in diagnosis. Further, we are funding crucial research to better understand EADs, which we hope will lead to noninvasive testing and treatments.”
Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to distribute educational packets to health care providers and awareness materials to the public.
Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating National Eosinophil Awareness Week: Alabama Eosinophilic Disorders Support Group; Allergy & Asthma Physicians; American Partnership for Eosinophilic Disorders; ausEE (Australia); Cincinnati Center for Eosinophilic Disorders; CURED Foundation; Families Affected by Eosinophilic Disorders (UK); Food Allergy & Anaphylaxis Connection Team; Food Allergy Research & Education; Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); Texas Children’s Hospital Eosinophilic Gastrointestinal Disease Program; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2016.
Visit www.apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.
About American Partnership for Eosinophilic Disorders (APFED)
American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. www.apfed.org