INFORMATION FOR PEOPLE WITH THE CONDITION
Andrea* – 18 years of symptoms before her diagnosis
Andrea* is now 64 years old. About 25 years ago, she first noticed that she had unusual difficulties eating: during a BBQ, a piece of meat literally got stuck in her throat. Andrea* was in pain, felt like she was suffocating, and panicked until the piece of meat finally dislodged itself and made its way into her stomach.
The incident frightened her. As two of her friends had cancer of the oesophagus, Andrea* underwent a gastroscopy. Given that no malignant disease was detected, Andrea* was reassured and the incident at the barbecue was initially forgotten.
“I adapted my diet largely to the foods I was able to swallow easily. But over time, that didn’t help.” - Andrea*, EoE patient
The swallowing difficulties persisted.
However, despite not perceiving it as such, Andrea still had swallowing difficulties. “Looking back, I probably always had symptoms, but I always found a supposed cause: I had eaten too quickly, talked too much while eating, drunk too little,” she says. “I then tried to only take small bites, chew for a long time, drink a lot and, above all, to always take my time and sit quietly when eating.” From then on, Andrea* adapted her diet largely to the foods she was able to swallow. But over time, even that didn’t help anymore. She repeatedly had acute swallowing problems, a tingling sensation in her throat, or a dry cough during and after eating.
Diagnosis: eosinophilic oesophagitis
About seven years ago, the symptoms became more severe. Andrea* decided to undergo another gastroscopy. This time the picture was different. “My oesophagus looked terrible, it was almost completely shredded.” Eighteen years after the first occurrence of symptoms, it was clear that Andrea* has eosinophilic oesophagitis (EoE).
“After the EoE diagnosis, I was distraught because there were no good and viable treatment options at the time,” says Andrea*. First, she took a proton pump inhibitor, a drug that blocks acid formation in the stomach. However, the symptoms persisted, albeit in a somewhat milder form. A further gastroscopy also showed that the inflammation was still active.
The last resort
“I was willing to try anything,” says Andrea*. This is why, in parallel with the frustrating attempts at treatment, she began to change her entire diet: she tried to eliminate milk and wheat, ate hardly any fish and drank only black coffee. “It was hard for me to go without my beloved latte macchiato. I only allowed myself to drink it at the weekend.” Andrea* also started baking her own bread using buckwheat or spelt flour.
The measures did not really help, as they only slightly alleviated the symptoms. “This is why I was delighted when, a few years ago, a drug was developed to treat EoE,” explains Andrea*. Her gastroenterologist prescribed the medication, which she now takes regularly. Andrea*: “For the first time ever, the gastroscopy and subsequent examination showed no further evidence of oesophageal inflammation.”
Back to life
Andrea* has since found her way back to normal life: “I take my medication consistently because I am worried that the EoE might cause narrowing of my oesophagus. I also have a gastroscopy once a year to assess the situation. It doesn’t bother me and it gives me a sense of security that the therapy is keeping the EoE under control and that I don’t have to worry about complications.”
She continues: “I’ve learned that you shouldn’t just put up with swallowing difficulties, but that you should have them examined by a doctor. The treatment has allowed me to lead a normal life again. My quality of life has improved considerably and I’m already looking forward to the next barbecue.”
* Name changed by the editorial team