Nancy and Ted's Story with Eosinophilic Oesophagitis

Nancy has multiple Anaphylactic Allergies and suffers from a rare autoimmune disease called Eosinophilic Oesophagitis (EoE). She was unwell as a baby and was finally diagnosed when she was three years old.

We went to countless doctor's appointments, constantly being told that it was reflux and she would grow out of it. But she continued to get worse, becoming violently sick whenever she ate anything to the point that she couldn't swallow even water at one stage.

Thanks to Nancy's amazing allergy team at Southampton Children's Hospital, she was referred and finally got a diagnosis of Eosinophilic Oesophagitis (EoE). Since then, Nancy's diet has changed again and again as her disease has grown with her. We have eliminated triggers exacerbating her condition and learned to manage her symptoms.

After The Diagnosis

As Nancy has grown, her disease has evolved with her. Due to food obstructions worsening, Nancy has been fitted with an NG (nasogastric) tube. For Nancy, this is a relief; she can enjoy being a child, playing and joining in with her friends instead of worrying about the next time she eats. This has also ensured she maintains a steady weight.

Recently our son Ted has been having similar symptoms to Nancy and will soon be tested for the same disease.

Support Ted And Nancy in Raising Awareness

Ted and Nancy would like to raise awareness and money for the EOS Network, who have supported us over the years, and Southampton Children's Hospital, who care for Nancy.

The children plan to do this by completing the AJ Bell Junior Great South Run, taking a 24-hour walk from LEGOLAND Windsor to Southampton Children's Hospital, and hosting a raffle with amazing prizes!

Please, support them by sharing this page and donating to their fundraiser

What is Eosinophilic Oesophagitis (EoE)?

Eosinophilic Oesophagitis (EoE) is a rare autoimmune disease occurring in approximately 1 in 1500 people. It is a chronic disease affecting the oesophagus, the tube connecting the mouth and stomach. Too many eosinophils, a type of white blood cell, in the oesophagus, causes inflammation, making swallowing difficult.

What is The Cause of Eosinophilic Oesophagitis (EoE)?

The cause of EoE is not yet completely understood, but it is triggered by eating certain foods, most commonly (but not exclusively) milk, wheat, nuts, soya, fish and eggs. It may be triggered by breathing in specific allergens like pollen.

To make things even more complex, the substance triggering each condition may differ within the same individual, e.g. it can be pollen for Asthma and Milk for EoE.

What Are The Long-Term Issues?

If left untreated, EoE can cause long-term permanent damage to the oesophagus due to strictures (narrowing). Eosinophil gut disorders are long-term conditions (chronic is the medical term); therefore, patients need a lifelong method to control the symptoms and reduce potential complications.

The lack of generally accepted therapies makes the management of the condition challenging for doctors and their patients.

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