Our post today comes from a guest blogger, Mary Jo Strobel, Executive Director of the American Partnership for Eosinophilic Disorders (AFPED). Thank you Mary Jo for blogging with us!
Eosinophil. Some of you reading this are very familiar with the word. Others may never have heard of it.
Eosinophils, a type of white blood cell, are an important part of the immune system, helping to fight off certain types of infections and parasites. Their presence in the blood can be caused by a number of reasons including, but not limited to, food and environmental allergies and leukemia. 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.
The diagnosis depends on where the eosinophils are found:
- Eosinophilic Cystitis: bladder
- Eosinophilic Fasciitis: connective tissue
- Eosinophilic Gastrointestinal Disorders:
- Eosinophilic Colitis: large intestine
- Eosinophilic Esophagitis: esophagus
- Eosinophilic Gastritis: stomach
- Eosinophilic Gastroenteritis: stomach and small intestine
- Eosinophilic Granulomatosis with Polyangitis, aka Churg-Strauss Syndrome: lungs, sinuses, heart, various organ systems
- Eosinophilic Pneumonia: lungs
- Hypereosinophilic Syndrome: blood and any organ
While these diseases are rare, they are an emerging healthcare problem around the globe. The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDs), affecting the gastrointestinal tract. In patients with EGIDs, particularly eosinophilic esophagitis, food proteins often trigger eosinophils to release toxins into the affected area, causing inflammation and damage. Treatments include steroid treatments or restricted diets. Some patients may have a severely restricted diet, and nutrition is provided in whole or in part by an elemental formula, such as Neocate®.Symptoms can vary between individuals, as well as by the type of eosinophil-associated disease. EGID symptoms commonly include nausea or vomiting, diarrhea, poor growth or weight loss, abdominal or chest pain, reflux that does not respond to acid-blockers, or difficulty swallowing.
For the 7th consecutive year, APFED is spearheading the movement to unite groups that support the “eos” community in honor of National Eosinophil Awareness Week, recognized during the third full week of May.We are working harder than ever this year to educate the public, the medical community, and lawmakers about the challenges faced by patients who have these diseases. We need your help! Here are some easy ways to get involved and help us spread the word:
- Share this fact sheet and/or the "Can you say 'Eosinophilic?” flyer, with friends, family, health care providers, and businesses in your community.
- Share facts about eosinophil-associated diseases on your social media pages.
- Change your social media profile image to a NEAW ribbon.
- Share your story by sending a letter or email to family and friends.
- Ask media outlets to run a story about eosinophil-associated diseases. A sample letter to the editor is provided, as well as Public Service Announcements for local radio and tv stations.
- Encourage family and friends to watch our videos about this awareness week and "Eosinophilic Gastrointestinal Diseases".
- Organize a fundraiser to benefit research of eosinophil-associated diseases. For ideas or to get started, email email@example.com.
Join the National Eosinophil Awareness Week community on Facebook.
APFED is thrilled to partner with Nutricia in our celebration of NEAW! Nutricia’s generous support will provide APFED the means to get educational packets into the hands of healthcare providers across the U.S.
Be sure to visit the National Eosinophil Awareness Week page for easy ways to get involved and for downloadable materials to help with awareness and education efforts.
Will you take just a moment to help us to teach others about these diseases? It’s as easy as sharing this blog post, and it can make a world of difference!
About Mary Jo Strobel and APFED
Mary Jo Strobel is Executive Director of the American Partnership for Eosinophilic Disorders(APFED), a non-profit patient advocacy organization whose 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. APFED’s Hope on the Horizon Research Fund, a peer-reviewed competitive grant program supported entirely by donations, allows investigators to initiate new, relevant projects. Many focus on new ideas that are likely to lead to further development of less invasive testing, new treatments and ultimately a cure.
Mary Jo and her husband have two children and live in Northern Virginia. Her niece Lindsey was diagnosed with eosinophilic esophagitis eight years ago.