Imagine having to stand every time you eat or drink, not by choice but to avoid choking to death. This is the daily reality for 25-year-old Elise Baynard, a healthcare worker from Dover, Kent, who lives with achalasia—a rare disorder that affects the esophagus.
For Elise, what most people take for granted—eating—is a delicate and often painful process. Diagnosed with achalasia after years of misdiagnoses and worsening symptoms, the condition has made it nearly impossible for her to consume food and liquids normally, resulting in her being sick up to 60 times a day.
Elise’s ordeal began in January 2020 when she suddenly found herself unable to swallow or burp, accompanied by a persistent tightness in her chest. Initially, doctors misdiagnosed her condition as acid reflux and prescribed medication, which did little to alleviate her symptoms. As time passed, her ability to consume staple foods like bread and pasta deteriorated.
“One day, I was sick about 63 times. I’d wake up in the night for water and it came straight back up,” Elise shared.
Her condition worsened over time, and even drinking liquids became a challenge. By 2021, after years of frustration and feeling dismissed by healthcare professionals, Elise was referred to a gastroenterologist. Despite undergoing an endoscopy that returned normal results, her condition continued to deteriorate. It wasn’t until November 2024, after enduring years of pain and uncertainty, that a specialist in London recognized her symptoms and diagnosed her with achalasia.
Unable to eat or drink anything normally, the 25-year-old has undergone dramatic weight loss. Now weighing just seven stone, Elise survives on a restricted diet of cereal soaked in milk and crisps. The condition has not only affected her physical health but also caused immense pain. “One side effect is an esophageal spasm – pain in my jaw, neck, and back,” Elise shared. “It literally feels like having a heart attack. Some days I’m sobbing on the floor in pain. It’s not a death sentence, but it’s no way to live.”
Achalasia is a rare disorder of the esophagus that hinders its ability to move food and liquids into the stomach for digestion. The issue lies in the lower esophageal sphincter (LES), a ring of muscle where the esophagus meets the stomach. In people with achalasia, the LES fails to relax, blocking the passage of food into the stomach.
Symptoms of achalasia include trouble swallowing, regurgitation of undigested food, chest pain that comes and goes, heartburn, weight loss, cough at night, and hiccups.
Achalasia can become a serious condition, particularly if left untreated. Over time, individuals with achalasia may find it increasingly difficult to consume solid foods and even liquids, leading to significant weight loss and, in severe cases, malnutrition. Additionally, those with achalasia face a slightly elevated risk of developing esophageal cancer, especially if the condition has persisted for an extended period.
The exact cause of achalasia remains unknown, but one theory suggests that it could be an autoimmune disease triggered by a viral infection. In this scenario, the immune system attacks the nerve cells in the muscle layers of the esophageal walls and the LES. These nerve cells, which are responsible for controlling muscle function, gradually degenerate for reasons that are not yet fully understood. This degeneration leads to excessive contractions in the LES, preventing food and liquids from passing through the esophagus into the stomach.
Achalasia affects approximately 1 in every 100,000 people in the US annually. It is most commonly diagnosed in adults aged 25 to 60 but can also occur in children. The condition does not show any preference for gender, race, or ethnicity, nor does it typically run in families.
After extensive research, Elise has opted for a surgical procedure known as peroral endoscopic myotomy (POEM), which she believes offers her the best chance of regaining the ability to eat normally. The POEM procedure involves cutting away muscle along the lining of the lower esophagus, creating more space for food to pass into the stomach. However, Elise remains uncertain about how long she must wait for the referral.
“I have to wait for my specialist to refer me for the procedure. But it took years to get a diagnosis—I don’t know how long this will take. I’m desperate for the procedure,” Elise shared.
Other treatment options for achalasia include balloon dilation, a non-surgical procedure that helps to widen the lower esophagus. In severe cases, however, esophagectomy—removal of the esophagus—is performed as a last resort. Early diagnosis and timely intervention remain crucial for managing this condition effectively.
Elise’s journey with achalasia highlights the importance of early diagnosis and appropriate treatment. Her resilience and determination serve as an inspiration to others facing similar challenges. While the condition has drastically affected her life, Elise remains hopeful that the POEM procedure will restore her ability to eat normally and improve her quality of life.
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