The early years

When Amanda Cordell’s son Samuel was born 20 years ago, he slept peacefully through the first night of his life. It was the last time he was to enjoy that simple luxury.

The signs that something was wrong with Samuel were there from the first few days of his life.

Samuel always seemed uncomfortable, a fussy eater who vomited up my breast milk and never settled at night. He developed cradle cap and then eczema, which became infected so badly that he had to be admitted to our local hospital.

In the hospital, Samuel caught Rotavirus and was placed on a special feed but even when he was well enough to be discharged, he still suffered constant vomiting, whilst his explosive bowel movements overflowed his nappy.

‘We hardly slept for months,’ remembers Amanda. ‘We would take turns walking up and down with him all night whilst he cried or was sick. We were new parents, so it was sometimes hard to know what was normal, and our GP and the local hospital seemed to have little idea on how to help us. However, David and I were convinced that there was a connection between his bowel issues, eczema, and vomiting.’

Getting a diagnosis

At seven months, Samuel was referred to a paediatric gastroenterologist who diagnosed him with an eosinophilic gastrointestinal disease as the cause of his relentless symptoms.

‘We didn’t know it then, but we were at the start of a very long, tough journey,’ says Amanda.

Samuel was placed on a highly restrictive diet with elemental feed, and Amanda started to search for information that might help her and David support their son. Whilst there was virtually no information on the condition in the UK and Europe, Amanda learned about the research into gut allergies and eosinophilic disorders at the Cincinnati Children’s Hospital. In 2005 she and her husband David attended a conference when, for the first time, they realised the value of having a support group.

‘It was such as relief to be in an environment where people understood what you were going through but also where there was hope for the future. I came back to the UK and started up an online UK support group, and things just went from there.’

‘We quickly discovered that there was a whole raft of people, often with very poorly children who were simply desperate for help. There was clearly a huge knowledge gap and a lack of consensus on how to treat these patients on the clinical side.

Is it genetic?

Their daughter Heather born in 2007, also developed gut problems, eczema and immediate allergies.

It was devasting to hear our daughter also be given an eosinophilic diagnosis.

We spent the next few years raising funds, and with the support of other families affected by eosinophilic diseases in 2010, we registered a charity.

‘Sadly, in December 2013, Samuel became seriously ill, and I was forced to a back seat from the charity for a few years, but in the meantime, the need for research, diagnosis consensus and treatments became even greater.”

‘I went back to Cincinnati for the 2017 CURED conference and was completely humbled by the great work that the researchers and patient advocates had done in driving forward awareness and change in the USA. The meeting had attendees and presenters from around the globe, including the UK’s Professor Stephen Attwood, who first identified eosinophilic oesophagitis. I came back inspired to bring together the global expertise to improve disease awareness, access to medical care, and patient support for all those suffering from eosinophilic diseases.’

Changing the future

The charity was relaunched in 2020 as the EOS Network, newly supported by a medical and scientific board and experienced trustees.  

A change in the constitution enabled two arms: a community hub for patients and their families and a global network that today includes over 400 healthcare professionals in 39 countries.

There is a real need to expand our reach to more patients, families, and healthcare professionals. Even when someone reports the symptoms, it is still difficult for people to get in front of a doctor who understands EOS diseases. This can result in an average 8-year delay in diagnosis for our adult community and 3-years delay for a child.

This is why I was so pleased to be able to represent our communities voice in the new EoE guidelines and other projects around the globe.

EOS Network’s mission is to ensure that every person with an Eosinophilic Gastrointestinal Disease receives a prompt, accurate diagnosis, the right treatment for them, and support to live with their condition.

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The charity has grown 50% year on year, our website now reaches 5000 new visitors a month seeking information and support, and we have nearly 1500 community registrants.

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Last updated 3/5/23 ©EOS Network 2023 All rights reserved