Stella has shared her 50-year-to-diagnosis story to raise awareness of Eosinophilic Oesophagitis and help others living with EoE. Watch her full video at the end of this article.

Childhood Food Aversion

As a child in the 60s-70s, Stella had problems eating, but she was only seen as being a fussy eater in an era when you were told to finish your food or go without.

For a very long time, I thought it was normal to be sick and unable to swallow food

Trying to manage the symptoms, Stella trained as a chef to eat only the food she had prepared. Another strategy was to avoid eating at all, which, unfortunately, led to eating junk food like chocolates and biscuits. As time went on, it got worse, with her diet becoming very limited.

Pregnancy Changed Stella's EoE Symptoms

While pregnant with her son, she found she could suddenly tolerate eggs after years of them making her feel sick. During these nine months, she enjoyed all types of eggs: boiled, scrambled, and egg sandwiches, only to find that after giving birth, she could no longer eat eggs without feeling ill again.

Stella visited her doctor many times, but her concerns were simply explained: "It's just heartburn", "It's just indigestion". She has even been referred for a mental health assessment only to be told that this was a physical problem, not a mental health condition.

She began to feel it was never going to improve.

It continued to affect her personal life and socialisation, as she and her husband were nervous about Stella going out and having a food obstruction. She says:

It's frightening when food gets stuck, and people try to thump me in the back, but it doesn't work with EoE. They think you are choking. People are also reluctant to invite you to anything as catering for you it too complicated.

At 50, she finally got a diagnosis of Eosinophilic Oesophagitis

Whilst attending the Allergy Show, she met EOS Network's Charity CEO Amanda Cordell, who listened to her journey and encouraged her to continue her quest for a diagnosis.

Having moved across the country, she took the information to her new GP. They referred her to the gastroenterologist in a hospital, who took biopsies and confirmed the EoE diagnosis.

My treatment journey continues but knowing there are people like me, who I can talk to and share ideas and with the support of EOS Network, it keeps me going.

Stella has used her personal experience to train restaurant owners to cater for people with allergies and has become a valued advocate for the EOS Network charity mission.

Being a part of the EoS Network community gave Stella the confidence to speak to the GP and say what she thought was wrong. She is now willing to tell her story to help others to receive their diagnosis more quickly.

Understanding that there's more research, treatments, and new guidelines is important for GPs and will help ensure no one has to wait 50 years for a diagnosis again.

Learn more about EoE

Link to UK EoE guidelines

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