Does your general practitioner (GP) or physician know enough about Eosinophilic Oesophagitis (EoE)

Professor S. Attwood notes that despite being studied since the early 1990s, people with EoE often still struggle to receive a diagnosis and proper treatment. We must do more to spread awareness and early recognition among GPs. These are often the first specialists we go to when we experience any symptoms. Recognising the symptoms of EoE, often subtle changes that patients can miss themselves is an important first step, to receive a referral to a gastroenterologist enabling the necessary biopsies to be taken by endoscopy which are needed to diagnose them. 

Why raising awareness among general practitioners is vital for better EoE patient outcomes

This is a relatively new disease and was previously classed as rare. Local general primary care doctors may still not have knowingly encountered this condition in their practice nor be aware of the symptoms.

Current figures show EoE affects 1 in 1500 people, but as awareness increases, this number is expected to rise considerably.

On average, it takes eight years for the adult members of the EOS Network and three years for children to receive a correct diagnosis. Some people have stories of decades of trying to get the right diagnosis and treatment, with symptoms being mistaken for common conditions such as reflux, food anxiety, and difficulty swallowing food, causing severe chest pain that was mistaken for a heart attack in our community members

This not only puts a heavy burden on a patient but also leads to wasting medical resources on additional tests that aren't useful in diagnosing EoE. 

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. - Professor Attwood

"Think EoE" Awareness Campaign - raise awareness with your doctor

eosinophilic associated diseases charity banner

Educational materials included in the informational pack: patient leaflets, a support services poster for your clinic's waiting room, and a "Think EoE" poster to increase FBO awareness in your hospital’s Emergency Services staff area.

Please note that the printed version of the medical guidelines is not included.

EOS Network created a special campaign for our community to make a change in earlier EoE recognition and speed up the referral and diagnosing process, ensuring better patient outcomes. Anyone willing to help can do a quick research if they have any GPs interested and order an informational pack that contains educational and handover materials. You can then personally deliver them to your practice or doctor during your appointment. 

A better understanding of the condition means there are clues to recognising possible EoE and referring the person for investigation earlier, such as:

  • Family or personal history of allergic diseases (atopic) such as asthma, eczema, hayfever (rhinitis) and/or immediate allergies
  • Fussy eating/food avoidance
  • Drinking lots with your food
  • Slow eating last to finish a meal
  • Coughing when eating
  • Feeling the food going down when you swallow
  • Feeling nauseated, or burning or food regurgitation sensation when eating

Fact: 80% of our EoE community have 1 or more other allergic/atopic disease

How to reach more GPs: tips from an experienced advocate, Pennie

a woman dressed in eosinophilic oesophagitis awareness t shirt

Pennie with purple informational packs

Our passionate advocate, Pennie, is sharing her best insights on how to reach more GP practices and deliver informational packages to them. From the start of this campaign, Pennie delivered around 60 packs in her area!

From my personal journey, I can attest that until recently, EoE was often considered a rarity. However, thanks to the tireless efforts of the EOS Network, the landscape has shifted. More and more medical practitioners now recognise the disease and its profound impact on patients’ lives. 

As someone who has suffered from EoE for most of my life, it was a great relief when a consultant recognised the condition, and I was given medication to help relieve the symptoms; this was in about 2004. 

At that time, there was little that could be done, but over the last few years, this has changed, and there is hope for a brighter future for EoE sufferers now. The medication may not be perfect, but it is a very good start.

Yet, there are still medical practitioners, including GPs, who remain unaware of EoE. It’s crucial that we equip them with the knowledge to prevent misdiagnosis and confusion with other gastric disorders. To achieve this, we must ensure the distribution of EoS Network packs to as many interested practitioners as possible, including doctors, nurses, dieticians, health visitors, and surgery managers.

This is not easy, and it took me a while to make any progress; it is hard going but well worth it!

Contact suggestions for the UK: 

  1. Institute of General Practice Management
  2. NHS for your county (nhs(add your county)
  3. Each county will have an Educational Trust for GPs
  4. Gather the names of practices, all on the internet
  5. Some areas have organisations that gather and run groups of surgeries, i.e., Symphony in Somerset
  6. Ask anyone you know who is connected to the NHS for help with information
  7. Take every opportunity to give out the information. People can only refuse to take it!
  8. Befriend your local Practice Manager/nurse practitioner etc.

Please always be considerate of their staff, if you are asked questions do not get overwhelmed, we are always here to help.

Order Your "Think EoE" Pack here: