What is achalasia, rare swallowing disorder, due to which UK woman can eat only while standing up?

Imagine having to stand every time you eat to drink anything, 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 oesophagus.

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.

What is Achalasia, and why is it so life-changing? Here’s a closer look.

‘Not a death sentence, but it’s no way to live’

Elise Baynard’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, but it did little to alleviate her symptoms.

As time passed, Elise’s 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 come straight back up,” Elise told The Express.co.uk.

As time went by her condition worsened, 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 worsen.

It wasn’t until November 2024, after enduring years of pain and uncertainty, that the specialist in London recognised 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 oesophageal 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.”

The condition, she said, affects every aspect of her life.

“I can’t go out for food and drinks with friends in case I’m sick, or I have to make sure I’m always near a bathroom,” she said.

What is achalasia?

Achalasia is a rare disorder of the oesophagus that hinders its ability to move food and liquids into the stomach for digestion.

According to Johns Hopkins Medicin, the issue lies in the lower oesophageal sphincter (LES), a ring of muscle where the oesophagus meets the stomach. In people with achalasia, the LES fails to relax, blocking the passage of food into the stomach.

Those with achalasia experience symptoms such as trouble swallowing regurgitation of undigested food, chest pain that comes and goes, heartburn, weight loss, cough at night and hiccups.

How serious is achalasia?

Achalasia can become a serious condition, particularly if left untreated, states Cleveland Clinic. 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 oesophageal cancer, especially if the condition has persisted for an extended period.

What causes achalasia?

The exact cause of achalasia remains unknown, but one theory, as outlined by the Cleveland Clinic, 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 oesophageal walls and the lower oesophageal sphincter (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. For individuals with achalasia, the LES fails to relax properly, preventing food and liquids from passing through the oesophagus 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.

How can it be treated?

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 oesophagus, creating more space for food to pass into the stomach. However, Elise remains uncertain about how long she must wait for the referral, sharing her concerns: “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.”

Other treatment options for achalasia include balloon dilation, a non-surgical procedure that helps to widen the lower oesophagus. In severe cases, however, esophagectomy—removal of the oesophagus—is performed as a last resort. Early diagnosis and timely intervention remain crucial for managing this condition effectively.

With input from agencies