INFORMATION FOR PEOPLE WITH THE CONDITION
What is eosinophilic oesophagitis?
Eosinophilic oesophagitis (EoE) is a chronic inflammatory disease of the oesophagus. The origin and cause of the disease are not yet completely understood. The word oesophagitis is a combination of “oesophagus,” the technical term for the gullet, and the suffix “-itis,” which is used in medicine to denote inflammation. This inflammation of the oesophagus is characterised by the infiltration of what are known as eosinophilic granulocytes (particular types of white blood cells) into the mucous membrane, which is why the disease is called eosinophilic oesophagitis. Read more ...
What are the possible symptoms of eosinophilic oesophagitis?
The main symptoms of EoE in adults are swallowing difficulties (dysphagia) and/or pain when swallowing (odynophagia). In addition, chest pain, heartburn and retching often occur. In the worst case scenario, EoE can even cause a large chunk of food, in particular a piece of meat, to get stuck in the oesophagus. The technical term for this is “food bolus obstruction” or “food bolus impaction.” If the piece of food (bolus) cannot be coughed up or regurgitated, a doctor needs to use an endoscope (a thin flexible tube with image transmission) to remove it from the oesophagus.
In children, the symptoms are more complex. Here, EoE often manifests itself indirectly through loss of appetite or growth disorders (known as failure to thrive). As a result, diagnosis is often more difficult and may only be made a long time (sometimes several years) after symptoms first appear. Read more ...
If you experience these symptoms over an extended period of time, talk to your doctor.
Swallowing difficulties and a sore throat can also have a variety of other causes. They are symptoms of, for example, a cold, flu (influenza), tonsillitis or scarlet fever. Swallowing difficulties can also have psychological causes. However, severe, acute or prolonged symptoms should always be assessed by a doctor.
What treatment options are there?
There are currently three different treatment options: There are currently three different treatment options: taking medication ([topical] corticosteroids or proton pump inhibitors), adherence to a diet that avoids certain foods that contain allergens (substances that cause allergic reactions), and a procedure where the oesophagus is widened during an endoscopy (investigation with a flexible tube with image transmission). This widening of the oesophagus is also known as dilation. Read more ...
Raising awareness of the challenges of eosinophilic oesophagitis
Living with a chronic disease usually has a great psychological impact – especially as it can be associated with major limitations and unpleasant situations in everyday life. This is often the case with EoE: many people with the condition avoid eating with others so that they do not draw attention to themselves by eating slowly or having to deal with an incident. In order to avoid symptoms, patients chew their food for longer and drink more liquids with meals, which means that, overall, it takes them longer to eat a regular meal. As a result, their quality of life is often significantly impaired.
This is why it is very important to keep yourself and those around you well informed about the disease. With the right diagnosis and treatment, EoE patients can take part in social life as more of a matter of course and improve their quality of life.
Tell us your story
As it can often take years before EoE is diagnosed, the level of suffering increases accordingly for those affected and their relatives. We have compiled stories of patients with the aim of providing encouragement and raising awareness of this rare and often still unknown disease. Would you like to tell your story? Read more ...
We are looking for individual stories of people living with EoE who would like to share their experiences. Our goal is to learn from people with the condition and to give the disease a face. When was your EoE diagnosed? How does EoE affect your everyday life? Do you have any advice for others with the condition?
Please contact us at firstname.lastname@example.org and we will get in touch with you.
It goes without saying that all patient stories will be published anonymously. Share your story and help make a difference!