Eosinophilic Diseases Awareness Month

Eosinophilic Diseases Awareness Month takes place every May.

Eosinophilic diseases are currently not widely recognised or understood. Guts UK Charity exists to help change this. To help people not just feel seen, but heard and supported too.

What are eosinophilic diseases?

Eosinophilic Diseases (pronounced ee-oh-sin-oh-fil-ik), are often misdiagnosed because their symptoms can mimic other more common diseases. Those eosinophilic diseases that affect the gut are identified by the presence of a type of inflammatory white blood cell called an eosinophil. These are usually raised above a normal level in those with eosinophilic diseases. When too many of these cells are present where they usually otherwise aren’t, this can cause chronic inflammation, resulting in tissue damage.

The location of where these cells are elevated leads to diagnosis of two main categories within the gut: Eosinophilic Oesophagitis (EoE) and Eosinophilic Gastrointestinal Disorders (EGID). EoE is inflammation of the gullet, where as EGIDs affect the stomach, small bowel and large bowel.

The number of people diagnosed are:

• 1 in 3,000 for EoE – This is rare and is the equivalent of one person being diagnosed in a small town.
• 1 in 100,000 for EGID – This is very rare and is the equivalent of one person being diagnosed in a larger town.

Elle’s eosinophilic oesophagitis (EoE) story

“After my frightening choking experience, my whole family were desperate to get answers. I was lost and confused. Getting a referral to a gastroenterologist proved really difficult as COVID was rife, so in the end my family decided to go private. The paediatric gastroenterologist that I saw suspected I had Eosinophilic Oesophagitis (EoE) during my first consultation in 2021, and an endoscopy (where a sample of tissue from my oesophagus was taken) confirmed the diagnosis.” – Read Elle’s story here.

Why is awareness of eosinophilic diseases important?

Finding the appropriate medical care can be difficult as eosinophilic diseases are currently not widely recognised or understood. The average time to get a diagnosis is currently eight years which means we need to do better. People should not be going this long without a diagnosis. This is where awareness comes in. The more we raise vital awareness of eosinophilic diseases, the more widely recognised they become. This, in turn, can lead to a better understanding of these diseases and help to steer towards a future of more effective treatment through research.

Our current research

Dr Marcus Auth was awarded a Guts UK/BSPGHAN Award in 2021.

His research is looking into eosinophilic oesophagitis (EoE) in children. Dr Auth told us: “Although EoE has markedly increased in frequency in children over the past 25 years, the burden and severity of the symptoms is under-estimated by professionals and carers, resulting in poor quality of life, mental health problems, and disease progression (2, Auth MKH, 20201; Oliva S, 2021). ”

“Until now, diagnosis and evaluation of treatment success depend on repeated upper endoscopies (OGD) under general anaesthetic with multiple biopsies from the oesophagus. Over the last five years, there is growing evidence that environmental factors modify composition of the gut bacteria. Leading to activation of the immune system, migration of the eosinophils (white blood cells) into the oesophagus and inflammation compromising the function of the oesophageal movements, which can lead to strictures (narrowing of the oesophagus (gullet)).”

Dr Auth also explains to us that currently, there is no biological marker to show how active the disease is and response to treatment of EoE. However, stool tests have revealed reliable results in response to treatment in those with other gut conditions, for example, Crohn’s disease and ulcerative colitis. They have also led to changes in the composition of the gut bacteria (microbiome).

The aim is to then measure this in children in their response to EoE treatment, collecting stool samples before and after treatment in the hope that it reduces the need for endoscopy.

This research could potentially lead to kinder diagnosis options in future, with less invasive procedures needed. Imagine a world where this could become a reality. Your support helps research such as this happen and turn dreams into a reality. For a brighter future.

We must help the UK get to grips with guts.

Guts UK is committed to:

• Raising awareness of the symptoms of eosinophilic diseases, empowering people to reach out for help and use our information to query a possible diagnosis.
• Funding life-changing research into eosinophilic diseases, working towards improved understanding and wider recognition of the condition, and reducing diagnosis times.
• Providing expert information on eosinophilic diseases to patients and families. Knowledge is power. We help to get trusted information into the hands of those who need it most, when they need it most.

What other organisations can help?

The EOS Network is a charity who are on a mission to ensure that every person with an eosinophilic-associated disease receives a prompt, accurate diagnosis, the right treatment for them, and support to live with their condition.

You can contact them via:

Phone: 0333 772 1309

Via contact form: on their website

HOW CAN I HELP?

You can help us raise awareness of eosinophilic diseases by:

• Following us on social media and sharing our awareness and information posts during the month itself. You never know who we might reach and help together. Facebook, LinkedIn, Instagram, Twitter/X.
• Share your own experience, or a loved ones experience with eosinophilic disease to your own circles, and on your own social media channels. To submit your interest in sharing your story, please fill in and submit our story-sharing form.
• Fundraise for Guts UK Charity to help us abolish the taboos surrounding digestive health, and get to grips with guts. You can fund life-changing research, and empower people to seek help sooner.
• Donate £3 per month to Guts UK Charity. You can change and save lives.