Eosinophilic Oesophagitis (EoE) is a rare condition that affects around 1 in 1,500 individuals. It causes eosinophil accumulation, leading to an allergic inflammation or injury to the oesophageal tissue. Symptoms include difficulty swallowing or food getting stuck in the throat.

Despite being studied since the early 1990s, people with EoE often struggle to receive a diagnosis and proper treatment. We spoke with Professor Attwood, a pioneer in the field, to discuss the symptoms of the condition, diagnosis, treatment options, and future care developments.

Watch the full interview to learn more about EoE and its treatment breakthroughs, or read the transcript below.

How My Journey With Eosinophilic Diseases And EoE Began

It began a long time ago, in 1987. I was a research register working in America (Omaha, Nebraska) and specialists in our department were treating people with oesophageal diseases.

I noticed that there were patients who had really difficult problems with their swallowing, and the pathologist had identified that some of them had eosinophils.

Finding that EoE was a new disorder was exciting. We realised it was not related to acid reflux, so we knew we had something new.

But in the beginning, it was very difficult to persuade other people that this was important.

Getting the paper accepted in a scientific journal took another six years.

After publishing in 1993, it was quite difficult for people to accept it, so it took another five years before it became well-known in the medical community. And it remained challenging for the first ten years.

Three Major Developments I Have Witnessed During My Practice

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I've had a long career, and the three most important developments happened during that rather long journey. 

Firstly, it is the identification of a disease classification number, the ICD9. 

In 2007, we managed to achieve recognition of this disease internationally, and the ICD coding system gave us a specific code that was very important to standardise the condition description.

Secondly, understanding that patients had to have a biopsy sample taken from the oesophagus to make the diagnosis. 

There is no other way to make the diagnosis: you can't get it by a blood test or a skin test, and the only way to find out what's wrong is to do an endoscopy and take samples for biopsy.

That standardisation came along in 2011, so that really helped to understand how to get a diagnosis.

Formulation of an Oral Dispersable Tablet

Thirdly, it is treatment. For a very long time, we had treatments that worked in some but not in everyone. And it was quite a difficult journey for patients with EoE. 

In 2018, we developed a formulation of budesonide as an oral dispersable tablet that allowed the drug to be given as a tablet but dissolved. And it would stick to the oesophagus, where it was needed to be.

That tablet successfully resolved the symptoms in 85 to 90% of my patients. Histology symptoms have disappeared in 93 to 95%, and that's an excellent result. 

Even those few people who don't respond in the first 12 weeks will often respond to longer treatments, or sometimes they might need to stretch the oesophagus.

The third critical development is having an effective therapy licensed by the European Medicines Agency and proven by NICE.

The disease is chronic and lasts for a long time, so some patients have been on the journey with us for the entire duration. 

What Improvements I would like to see in the next 5 to 10 years

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I think there are some critical improvements I would like to see. One is identifying which types of people get EoE, and at the moment, we tend to see it. 

People with severe difficulty swallowing typically go to the GP, who refers them to an endoscopy department. 

Standardising Emergency Care: Pathways for Food Bolus Obstruction (FBO) and EoE

A third of patients who come with what's called a food bolus obstruction (FBO), when the food is entirely stuck in the oesophagus, go to an Accidents Emergency (A&E) Department. 

Most A&E departments need to learn that EoE is the most common cause of FBO.

I would like to see a new standardised pathway for patients with FBO who come to a hospital's A&E department. And that they always get an endoscopy and a biopsy the first time they come, if that could happen, we would catch at least another 20% more of the patients who would have been suffering.

So, the first thing is to improve diagnosis.

Raising Awareness Amongst Hard-to-Reach And Allergic Patients

I also think that there are people who have some symptoms and have been adapting their lives for many years, avoiding eating solid foods and telling nobody about it because it's embarrassing to them.

These people are hard to catch because they don't realise they've got a disease; they're just struggling, and they don't know about EoE. 

I'd like two things to happen. 

First, if they see a doctor, the doctor will be sensitive and ask questions about that. 

Second, about a third of patients with an allergy also seem to have symptoms of EoE. And it would be really good if specialists in allergy and immunology would routinely ask the patients if they have any difficulty swallowing solid food or how they manage it.

If the patient replies they don't eat solid food because it doesn't go down, they know immediately that the patient needs an endoscopy.

We need to improve diagnosis in people who got allergies and in people with FBO. I think, at the moment, we are missing out a lot.

Public Awareness: Tackling EoE in Targeted Communities

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The third area that I think would help improve diagnosis is public awareness. The disease is a lot more common in men, particularly younger men, and I would like to see an effort made to bring the symptoms of EoE into the public domain.

So that people, particularly who are looking after young men, would know about it. 

Innovative Diagnostic Tools Beyond Endoscopy 

The next thing I'd like to see is an improvement in the way the diagnosis is made. 

Most people don't like having an endoscopy, so it would be excellent if we could have a new way to make the diagnosis and get us enough samples of the oesophagus.

We are developing some new tricks, although I'm not sure they're going to be good enough.

One is the cyto sponge, a little capsule with a string attached you swallow. It dissolves in the stomach and pops out of the capsule, and when you pull it back, it dredges cells off the surface of the oesophagus, which is much more comfortable than endoscopy.

A cyto sponge test will be an important tool. It's available but not yet standardised.

This test would be good after therapy; after someone has therapy and needs a further check, they could have a procedure like this with a sponge rather than an endoscopy. 

In terms of quality of life, it's vital for patients who have EoE to feel normal.

The psychological impact of EoE is significant, and it would be nice if we could develop support systems that would include specialists like dieticians and allergists. 

We need to incorporate a wider team of healthcare professionals to support those patients because it's a difficult journey for many.

Public Awareness

In my discussion about public awareness, I should say that the EOS network is doing a fantastic job. I think it's super to have a patient organisation dedicated to supporting the wider patient issues. I think it's not only helpful to the patients, but it's beneficial to the medical system to have an organisation like EOS Network that's giving us feedback about what the patients need and how well we are doing as a Health Care system in supporting patients with EoE.

How To Spot The EoE Symptoms Early

As I mentioned before, the most dramatic EoE symptom is acute food bolus obstruction, FBO. However, some people with a food bolus obstruction may or may not have had some less severe symptoms beforehand.

Recognising the Red Flags: Subtle Signs of EoE

The symptoms that happen in many patients are just subtle changes in their ability to get food down. Eating normal food, they would notice they have to chop the food up a bit more and are just slow to swallow, so compared to the rest of their family or other people, they are the last ones to finish.

They don't recognise a problem but realise they are always the last to finish. That is not necessarily a disease, but if people are 10 or 15 minutes behind, that clearly indicates something is wrong. 

Spotting Dietary Changes in EoE and Communicating Symptoms Effectively to Your GP 

The other thing that people do is that struggling to get solid food down, they will just automatically choose soft foods or will liquidise food because it's more comfortable.

They don't know that they've got a disorder, thinking that it's just easier for them to do it this way.

So it's a subtle development of difficulty in getting food go down, and I think it would be great if people could recognise that and then explain to their GP: "I'm not able to eat chicken or bread anymore, I'm having to take soups and liquidised foods. Could I have a diagnosis for why is this happening ?" 

It's a lot easier to treat EoE earlier. 

Starting treatment before the onset of fibrosis, when the eosinophils only cause swelling and inflammation in the oesophagus lining, is ideal. Later, once fibrous tissue starts to deposit, it becomes harder, and treatment becomes less effective as it progresses. 

Early intervention can prevent the development of fibrosis in the oesophagus, leading to a better quality of life, particularly in eating and socialising for patients.

When a person can spot these symptoms

EoE can affect people of all ages, including very young children. However, young children may not be aware of the problem, and their parents may not recognise the symptoms. 

Often, parents may mistake it for the child's reflux, which is a common disorder. It can be challenging for young patients to communicate their symptoms and difficult for doctors to compare their symptoms to those of others. 

EoE can begin at any age; its most common onset is in the 20s and 30s. However, it can occur in any age group. It's not a condition that one necessarily has always; it can start at any point in life.

We extend our heartfelt gratitude to Professor Attwood for his invaluable contributions to the field of Eosinophilic Oesophagitis and for taking the time to share his insights and experiences with us. We are profoundly grateful for his expertise and continued efforts in advancing our understanding and management of this condition.