Once considered a rare condition, cases of eosinophilic esophagitis (EoE) are becoming more common. More than 470,000 people in the United States are living with EoE, a chronic inflammatory condition of the esophagus that causes symptoms that can disrupt daily life.

A proactive approach to care can help you stay ahead of EoE, letting you live your life without being defined by your illness.

Understanding EoE

EoE affects your esophagus, the tube that connects your mouth to your stomach. It happens when your immune system floods this tube with white blood cells in response to certain allergens, an abnormal reaction known as type 2 inflammation.

Over time, white blood cells called eosinophils build up in the lining of your esophagus, causing swelling that can lead to EoE symptoms.

For adults, the most common symptom of EoE is trouble swallowing, also known as dysphagia.

Other symptoms of EoE may include:

• Chest pain
• Food getting stuck in the throat after swallowing (impaction)
• Food coming back up after swallowing (regurgitation)
• Heartburn
• Stomach pain

These symptoms may be constant or come and go, but EoE is a lifelong chronic disease — and that means treating it is a lifelong commitment.

Taking steps to proactively manage your EoE, even when you’re not having symptoms, can help you control the condition better.

Why endoscopy matters

If you have EoE, your doctor probably used an endoscope to diagnose it. This long, skinny tube with tools like a light and camera is used to look at the lining of your esophagus.

It can also collect tissue samples that contain clues about your condition.

The name of the procedure where your doctor uses an endoscope is called an endoscopy. Getting an endoscopy on a regular basis — even when you feel fine — is important for staying on top of EoE.

“In order to assess EoE, three areas need to be measured: symptoms, endoscopy (how the esophagus looks) and histology (what’s on the biopsy),” said Evan Dellon, M.D., director of the Center for Esophageal Diseases and Swallowing at the University of North Carolina School of Medicine. “The reason for this is that symptoms are not always a reliable indicator of how active EoE is.”

A patient may feel well, but their esophagus can still show signs of EoE activity. Or a patient may have a lot of symptoms even when the esophagus and biopsies look pretty good.

Dellon suggests that people with EoE get an endoscopy after any change in treatment, whether starting something new or tweaking their current approach.

“We also recommend performing endoscopy even after things are controlled to make sure treatments are still working, but the time frame for this is individualized based on a patient’s specific disease characteristics,” Dellon said.

Know the signs of EoE

In addition to getting an endoscopy, you can stay on top of your EoE by knowing how to tell if your treatment isn’t working.

“Typically if a treatment is working well, symptoms should ultimately be improved … with the endoscopy and biopsies improving as well,” Dellon said.

“If [symptoms were previously improved], but now symptoms — for example food sticking or trouble swallowing — return, then that’s a sign that the treatment may not be working.”

Flexibility is key when it comes to EoE

Nothing stays the same in life, and this often includes your EoE treatment needs. The treatment that has always worked well for you may stop working, or new treatments may become available.

Or you may decide you want to try a different treatment option and see what happens.

Life changes can also dictate a shift in how you manage your EoE. These may include:

• Economic or insurance changes
• Going to college
• Moving
• Pregnancy
• An unpredictable schedule

“For example, someone who is in college may not want or be able to do diet elimination and opt for a medication for EoE,” Dellon said. “However, after graduation and when things are more stable with a job, that same person may want to try to be off medications and try diet elimination as a treatment.”

Knowing that EoE — or life — may throw you a curveball can help you cope if the need for treatment changes arises.

Navigating EoE treatment with clear communication

As you travel through life with EoE, it’s important to be clear with your care team about what matters to you. Communicating your treatment priorities can help your clinicians and you put together a plan that meets your needs.

“One tenet of the way we currently approach treatment in EoE is with shared decision-making,” Dellon said. There are several safe and effective options for treating EoE, and which one is best for you mostly depends on your preferences and priorities.

Determining which treatment is best for you requires good communication between you and your clinician.

“Healthcare providers need to give enough information about treatment options so there can be a discussion and a patient can come to a decision.”

It’s also important to understand that treating your EoE may involve tradeoffs. For example, Dellon said patients may need to choose between using a medication that is inexpensive but also less effective and one that costs more but may work better.

Read: How Shared Decision-Making Can Lead to Better Healthcare >>

Staying the course

Though EoE is a lifelong chronic condition, it can be managed — as long as you keep treating it.

“Though there’s no cure right now, we have multiple safe and effective treatments,” Dellon said. “But they do have to be taken long-term because we know that EoE will almost universally flare up again when treatments are stopped.”

This educational resource was created with support from Sanofi and Regeneron.

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