Amy's parents knew there was something different about her as a baby.
She was a fussy eater. Every time she was fed she would cry until she threw up.
That wasn't necessarily uncommon. But there was one symptom in particular that stood out.
"My parents said they couldn't burp me," Amy, now aged 51, says.
Her inability to burp stuck with her through childhood and into adolescence. But she didn't recognise it as a problem — it was just a fact of life.
For Amy it was normal to feel nauseated all the time. She became full easily, noticed strange gurgling noises in her throat, and felt pressure in her stomach and chest.
She went from doctor to doctor and was dismissed every time. Eventually she learnt to avoid certain foods and found positions that occasionally relieved her discomfort.
Until one night about 10 years ago, when an unpleasant experience with a fizzy drink sent her looking for answers.
"I remember laying on the couch feeling awful and Googling my symptoms," Amy says.
"And I found the Reddit group."
At the time, the No-Burp Reddit thread was full of self-help tips and exercises promising to relieve symptoms, but there wasn't yet a name for her cluster of symptoms.
Amy adopted the advice and forgot about the community for several years, until just over a year ago, when she visited a psychologist for medical anxiety.
As fortune would have it, the psychologist had recently listened to a podcast in which people described similar symptoms. She suggested Amy revisit Reddit for answers.
That's when Amy finally found her diagnosis: retrograde cricopharyngeal dysfunction (R-CPD).
"Fifty years of people telling me I'm crazy and making this up, and here it is," she says.
"It has a name."
Not only does the condition have a name, it also has a potential cure.
Botox to the rescue
Robert Bastian was the first to publish a study on R-CPD — and the first known physician to successfully treat it.
The Chicago otolaryngologist identified the "cardinal" symptoms of R-CPD: bloating, gurgling and excessive flatulence, all caused by an inability to burp.
"Every part of the gastrointestinal tract is stretched and overfilled with air," Dr Bastian says.
"That is the source of every symptom."
And the symptoms can be debilitating. Many people don't eat outside their own homes, are limited in the types of food they can eat, and struggle in social situations.
When Dr Bastian first came across these symptoms in late 2015, he immediately suggested the patient get a Botox injection in his oesophagus.
He wanted to prove that the sphincter near the top of the patient's oesophagus simply needed to open to allow him to burp.
Botox can be injected into the muscle through the side of the neck, or under anaesthesia via the mouth.
And it worked. The patient could finally burp.
But Botox only lasts between three and six months, so Dr Bastian thought the patient would need surgery to cut the muscles in his oesophagus for permanent relief.
"To my surprise, he seemed to continue burping after six months."
The man shared his experience on Reddit and suddenly Dr Bastian had an influx of patients seeking the same result.
Of the more than 1,200 patients the Bastian Voice Institute has seen since, approximately 80 per cent are still burping after the Botox wears off.
But how? Dr Bastian suspects that during the Botox months, patients learn how to burp, suggesting that for some unknown reason, they never learnt how to do it in the first place.
"How [else] would you explain that a single injection of a medication that is only going to last for three to six months … fixes the problem permanently?"
Diagnostic testing
Sydney gastroenterologist Santosh Sanagapalli saw his first patient with R-CPD about three years ago.
The woman had come across a description of the condition online and, coincidentally, Dr Sanagapalli had just read Dr Bastian's study.
"She was very excited that I had actually heard of the disorder," Dr Sanagapalli says.
"I think she'd seen multiple specialists in the past who had dismissed her and who didn't believe there was anything wrong with her."
To confirm a R-CPD diagnosis, Dr Sanagapalli conducts a test called oesophageal manometry.
He challenges his patients to down a fizzy drink before putting a small probe in their stomach to observe the pressure in their oesophagus.
"Normally, when we drink fizzy drinks, we burp a lot," Dr Sanagapalli says.
For most people, the muscle at the top of the oesophagus, called the cricopharyngeus, would opens up and allow them to burp.
"In [R-CPD] patients it becomes very clear what's happening because we see a huge build up of pressure in their oesophagus."
However, in the seven years that Dr Bastian has been seeing R-CPD patients, he has not ordered a single diagnostic test.
"Other people would have a different opinion about whether we should do [diagnostic] testing for this condition," he says.
Many patients who come to him have already undergone a battery of procedures and are often jaded — sometimes even hostile — about further probing.
Dr Bastian believes that while confirming the diagnosis is important for the medical literature, it should be optional for the patient: "But again, that will be a source of ongoing discussion."
Dr Sanagapalli understands why some gastroenterologists are averse to doing diagnostic tests for R-CPD, but says it's important to confirm there's nothing else going on.
"Up until very recently these patients were often subjected to a wide battery of diagnostic tests which aren't really relevant to the condition," he says.
But with the fizzy drink manometry test, he says gastroenterologists can not only confirm the diagnosis, but also show patients clear images of what's going wrong with their oesophagus.
Relief for Amy at last
Amy is glad she finally has an answer — and the ability to burp — but she understands why so many people with R-CPD are misdiagnosed.
"It really does physically kind of feel like an anxiety attack."
Not only can the symptoms mimic an anxiety disorder, the experience of being dismissed by doctors only adds to the stress.
"By the time I got treated, I had so many different layers of anxiety about the whole thing."
It's unclear what proportion of the population has R-CPD. Dr Sanagapalli suspects many unknowingly live with the condition.
Amy also believes R-CPD is more common than people think. She hopes more awareness will embolden sufferers to access treatment.
"How many medical conditions can you think of where there's one really straightforward treatment, and 80 per cent of people are cured?" she says.
If it weren't for the internet, the condition might never be widely known, and patients would go untreated.
"It provides a valuable lesson about the power of the internet in improving health outcomes," Dr Sanagapalli says.
"The story is also humbling for medical practitioners … We don't know everything, and there are always new things to be discovered."
Dr Bastian — who has become something of a celebrity on the No-Burp Reddit thread — thinks the internet is a "marvellous" tool for patients.
"I love the idea that people can find a thing that is rare and unusual and unknown, and then go take it to their physician."
But he cautions: "Find a physician who will listen to you and who won't blow you off."
