Atlanta, GA, May 19, 2014 --(PR.com
)-- Imagine having a rare disease that causes your esophagus to 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. These diseases aren’t imaginary – eosinophil-associated diseases are real, they are rare, and they are growing in prevalence.
Eosinophil-associated diseases occur when levels of eosinophils, a type of white blood cell, are elevated in certain areas of the body. Eosinophils play an important role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers (e.g., food and airborne allergens) by releasing toxins into the affected area. The diagnosis depends on where the eosinophils cause damage. Subsets include eosinophilic gastrointestinal disorders (affects esophagus, stomach, or intestines); eosinophilic granulomatosis with polyangiitis, aka Churg-Strauss Syndrome, (affects lungs, sinuses, heart, and various organ systems); and hypereosinophilic syndrome (affects blood and organs).
Eosinophilic gastrointestinal disorders 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.
The American Partnership for Eosinophilic Disorders (APFED) will celebrate the 7th annual National Eosinophil Awareness Week May 18- May 24 by uniting patients, families, patient advocacy groups, medical institutions, medical societies, physicians, and companies that support those who have eosinophil-associated diseases in effort to create awareness and educate the public and the medical community about these diseases.
“Eosinophil-associated diseases are rare diseases, but are emerging as a worldwide health care problem,” said APFED Executive Director Mary Jo Strobel. “There is no better time than National Eosinophil Awareness Week for patients, caregivers, organizations, and health care providers to work together in a united effort to raise awareness about what these diseases are and what it is like to live with them.”
Due to the lack of information or awareness of these diseases, patients 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.
“These diseases affect people of all ages and have a significant impact on one’s quality of life,” shares APFED’s President Dr. Wendy Book. “By educating the public and health care providers, we can reduce delays in diagnosis. We are funding critical research that will lead to noninvasive testing and treatments for these diseases.”
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, 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.
Visit apfed.org to learn more about eosinophil-associated diseases and research being conducted, or for a listing of 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
Organizations, Groups, and Healthcare Providers Celebrating National Eosinophil Awareness Week:
Alabama Eosinophilic Disorders Support Group; American Partnership for Eosinophilic Disorders; ausEE (Australia); Central Virginia EOS Support Group; Charlotte Supports EOS; Cincinnati Center for Eosinophilic Disorders/Cincinnati Children’s Hospital Medical Center; Families Affected by Eosinophilic Disorders (UK); Food Allergy & Anaphylaxis Connection Team; Food Allergy Research & Education; Matthew Greenhawt, MD, University of Michigan Food Allergy Center; Greenville Spartanburg Eos Support Group; International Association for Food Protein Enterocolitis; Washington DC Area Eosinophilic Connection