American Partnership for Eosinophilic Disorders


There is a founding principle within APFED: “We Get It!” And we do. Our founder’s intimate experience with eosinophilic gastroenteritis and frustration out of the lack of resources available led to the building of an organization rallied around change. APFED was born out of necessity.
 
 

OUR MISSION

 
The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of mothers of young children living with eosinophil-associated diseases. We are a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders.
 
Mission Statement:
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.
 

WHAT IS AN EOSINOPHIL-ASSOCIATED DISEASE?

 
Eosinophils are a type of white blood celland they play an important part of our immune system. Eosinophils help us fight off certain types of infections, such as parasites. Eosinophil-associated diseases are chronic and require long term management. The symptoms may be debilitating and often lead to missed time at school and work, and may greatly impact a patient’s quality of life.

 

 


What are the symptoms?

Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.
 

 

 
 
Symptoms of EoE may vary from one individual 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. Adolescents and adults most often have difficult or painful swallowing. Their esophagus may narrow and cause food to become stuck (impaction), causing a medical emergency.
 
Symptoms also may vary given the developmental ability and communication skills of the age group affected.
 
Common symptoms include:
  • Reflux that does not respond to medication (acid suppressors) – infant, child, adult
  • Difficulty swallowing – child, adult
  • Food impactions (food gets stuck in the esophagus) – older children, adult
  • Nausea and Vomiting – infant, child, adult
  • Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite – infant, child, rarely adult
  • Abdominal or chest pain – child, adult
  • Feeding refusal/intolerance or poor appetite – infant, child
  • Difficulty sleeping due to chest or abdominal pain, reflux, and/or nausea – infant, child, adult

How is eosinophilic esophagitis treated?

The two main treatments recommended for EoE are diet management and medication.
 
 

Diet management may include:

 
  • Targeted Elimination Diets- Foods that test positive on allergy testing or history are removed from the diet.
  • Empiric Six-food Elimination Diet- This type of diet has shown success in some patients. Instead of basing dietary elimination on allergy testing results, patients eliminate common allergy-causing foods (milk, eggs, wheat, soy, peanuts/tree nuts, fish/shellfish).
  • Elemental diet – All sources of protein are removed from the diet and the patient drinks only an amino acid formula. Sometimes, a feeding tube may be required.
  • Food trial – Specific foods are removed from the diet, and then added back, one at a time, to determine which food(s) cause a reaction.
 
Diet management involves repeat endoscopies with biopsies as foods are reintroduced to determine which foods are tolerated.
 

Medications may include:

 
  • Topical steroids – There are currently no FDA approved medicines available for the treatment of EoE. However, doctors have found that topical steroids are often successful in putting EoE into remission. Topical steroids (fluticasone or budesonide) are swallowed from an asthma inhaler or mixture to control inflammation and suppress the eosinophils. Systemic corticosteroids such as Prednisone are not used for chronic management of the disorder, but may be prescribed for acute situations and short periods of time.
  • Acid suppressors – May also help relieve reflux symptoms in some patients in combination with dietary therapy or medications.
 
In some situations, both medications and dietary therapy may be used together.

What causes eosinophilic esophagitis?

While the exact cause of EoE is not yet known, the general belief is that it’s typically caused by an immune response to specific foods. Many patients with EoE have food or environmental allergies. Researchers have identified a number of genes that play a role in EoE, including a recently discovered gene, calpain14 (CAPN14), that is expressed primarily in the esophagus. These pathways may provide new direction to diagnose, monitor and treat EoE in the future.
 

 

Who is affected?

EoE is a newly recognized disease that is now increasingly diagnosed in children and adults. Eosinophilic esophagitis is a rare disease, but increasing in prevalence with an estimated 1 out of 2,000 people affected. EoE affects people of all ages and ethnic backgrounds. While both males and females may be affected, a higher incidence is seen in males. People with EoE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. Certain families may have an inherited tendency to develop EoE.
 
 
 
 
 

Contact Us:

 
Mailing Address:
APFED
American Partnership for Eosinophilic Disorders
PO Box 29545
Atlanta, GA 30359
 
Phone:
Office: 713-493-7749
(8am – 4pm CST, Monday – Friday)
 
Email:
General Inquiries: mail@apfed.org
 
Website: