Real-life stories of people with EOSINOPHILIC OESOPHAGITIS (EOE)

James

20 years old

Hockey team captain & croupier, living with EoE for 6 years

James wrestled with EoE-related symptoms for years, but it was not until a piece of chicken lodged in his throat and a subsequent endoscopy and biopsy of his oesophagus revealed that he was living with EoE. He has tried a range of treatments for his EoE, ranging from elimination diets, dilation and medication in a bid to manage his disease.

Dave

46 years old

Father-of-two & IT company owner, living with EoE for more than 10 years

After enduring various EoE symptoms for more than a year, including difficulty swallowing food and severe chest pain, Dave underwent an endoscopy and biopsy of his oesophagus, which resulted in a diagnosis of EoE. Living with EoE has impacted Dave’s family, his social life, and has, at times, left him feeling depressed.

Bella

18 years old

Photographer & ausEE volunteer who has been living with EoE for most of her life

After failing to grow and thrive at only 4 months of age, Bella’s parents sought prompt medical attention. Following eventual referral to a gastroenterologist who performed an endoscopy and biopsy of her oesophagus, Bella was diagnosed with EoE at 18 months of age. For Bella, life without EoE is unknown. Her disease does, however, make her feel different, and certainly impacts her social life.

Sinead

22 years old

Brisbane photographer, living with EoE for more than 12 years

Sinead experienced EoE symptoms from early childhood, such as difficulty swallowing both food and liquids, multiple episodes of food becoming stuck in her throat and social isolation. Since diagnosis, she has tried a range of treatments for her EoE in a quest to effectively manage her debilitating disease. Despite this, she remains plagued by social anxiety when eating in public due to an ongoing fear of potential food obstruction.

Nadia

34 years old

Health professional & mother-of-two continuing to battle EoE symptoms a decade post-diagnosis

After wrestling with symptoms for more than a decade, such as difficulty swallowing food, heartburn and reflux, Nadia presented to her gastroenterologist and was examined via a gastroscopy. The next thing she recalls was waking up in hospital emergency after experiencing complications posed by her narrowed oesophagus. At the time, Nadia had not yet been diagnosed with EoE. Since her diagnosis, however, Nadia has learned to accept and better manage her disease. Along with her supportive partner, Nadia has lived and worked around the world, however she still feels that EoE has, at times, dominated her relationship with her partner and compromised her family’s quality of life.

Andrew

35 years old

Business owner, who has been battling EoE since he was 18 years old

Andrew’s multi-year journey to an EoE diagnosis began on his 18th birthday, when he was hospitalised after food lodged in his throat, accompanied by chest pain. The severity and frequency of these symptoms increased over the ensuing 5 years before receiving a diagnosis of EoE. Recently Andrew has found relief for his EoE symptoms with specific treatment after spending many years wrestling physiologically, psychologically and socially with his disease.

Kimberly

36 years old

Mother of six & online store owner, who wrestled with EoE symptoms for 8 years

First experiencing symptoms of heartburn and difficulty swallowing while pregnant, they were dismissed as pregnancy-related and then an allergic reaction to certain foods. However, after Kimberly’s sister was diagnosed with EoE after experiencing similar symptoms, Kimberly had an endoscopy and biopsy and obtained confirmation from a gastroenterologist that she too, had EoE. Although Kimberly has since learned to manage her debilitating disease, it does substantially compromise her daily life and her mental wellbeing.

Jamie

36 years old

Office administrator & bookworm living with EoE for the past 12 years

After wrestling with various EoE symptoms over the past 12 years, including difficulty swallowing food and heart burn, Jamie received a formal EoE diagnosis after a piece of chicken got lodged in her throat and obstructed her breathing. Jamie was rushed to hospital, where an endoscopy with biopsies taken revealed she was living with EoE. Although she has since learned how to better manage her disease, she still experiences anxiety around the uncertainty of what triggers her EoE and the resulting social isolation from the disease.

Naomi

40 years old

Mother-of-two & Government worker living with EoE for the past 3 years

After wrestling with various EoE symptoms for just under 3 years, including difficulty swallowing food and severe heart burn, Naomi underwent an endoscopy and biopsy of her oesophagus, which resulted in a diagnosis of EoE. Living with EoE has compromised Naomi’s psychological wellbeing given the ongoing uncertainty of when a food impaction will next occur.

Keli

40 years old

Business owner & car enthusiast living with EoE together with her son for 14 years

Keli’s first child began to suffer from EoE from only 2 months of age. Having visited several GPs and paediatricians to determine the root cause of her son’s refusal to eat, Keli too, became progressively ill. After being referred to hospital emergency on two occasions complaining of a stomach ache, Keli was eventually referred for an endoscopy and biopsy of her lower oesophagus, which led to her diagnosis of EoE. 2 months following her diagnosis, her then 18-month-old son was also diagnosed with EoE. Keli continues to wrestle with ongoing fatigue caused by her EoE, nonetheless, she maintains an optimistic outlook on life.

Andrew

50 years old

Business analyst & father of three, diagnosed with EoE 3 years ago

Andrew suspects he was living with EoE for around 15 years prior to receiving a confirmed diagnosis, which he received after he was forced to temporarily abandon his children in a restaurant while he rushed outside to clear a blockage in this throat by vomiting in the street. After this terrifying incident, Andrew finally agreed to seek professional advice.

James

54 years old

Accountant & timber enthusiast, who wrestled with undiagnosed EoE for 4 years

When James invited friends and family out to a restaurant to celebrate his 50th birthday, he took a few bites of his dinner and his throat suddenly became blocked. James was forced to abandon his birthday celebration, while he rushed to the restaurant bathroom to vomit in an attempt to clear the blockage. This attempt was unsuccessful and James ended up in the emergency department.

Patricia

58 years old

Leading senior constable & DIY enthusiast, living with EoE for more than 40 years

After wrestling with EoE-like symptoms, including difficulty swallowing food and severe chest pain, Patricia was eventually referred by her GP for an endoscopy and biopsy of her oesophagus, leading to a diagnosis of EoE. Patricia has since trialled a range of dietary treatments, which have taken a toll on her physical and mental health and wellbeing.