Achalasia Awareness Month

What is achalasia?

Achalasia usually affects the lower end of the oesophagus, where it meets the stomach. It interrupts the passage of food and fluid down the oesophagus to the stomach. This can result in difficulty swallowing. Achalasia is a condition which is specific to the oesophagus and doesn’t affect any other sites in the gut.

What are the most common symptoms of achalasia?

The most common symptom is difficulty swallowing (dysphagia) which occurs with both food and liquids.

Other symptoms can include:

• Food may feel as if it is stuck in the oesophagus after eating, causing chest discomfort or pain.
• Regurgitation of food (bringing food back up). This may occur as food is retained in the oesophagus and has nowhere to go except upwards.
• This can cause choking or coughing. This may lead to chest infections if the food goes back down the wrong way and into the lungs.
• As a result of food not passing into the stomach and difficulty swallowing, less food is ingested and it is common to lose weight.
• Sometimes, no symptoms are experienced and the condition is diagnosed incidentally during tests for a different condition.

These symptoms may be present for months or even years before people seek help. As well, because of the non-specific nature of symptoms and the relative rarity of achalasia, this means there can be a delay in diagnosis.

How can achalasia affect you?

The symptoms of achalasia can have an impact on people’s general well-being. People can struggle to keep weight on and it can lead to poor nutrition. Meaning if you are unable to maintain a healthy weight and become malnourished, other feeding methods may be needed.

Complications from the actual condition can also affect you. These are both very rare and include:

• Mega-oesophagus: this is where over a long period of time the oesophagus continues to dilate until it becomes severely enlarged. The muscles then cannot stretch anymore, sometimes causing the oesophagus to tear or burst.
• Cancer of the oesophagus: achalasia can very rarely be associated with this cancer. Although highly unusual it is one of the reasons you should remain under outpatient follow up with a specialist.

How does achalasia behave over time?

Unfortunately, there is no cure for achalasia. Some patients will achieve reasonable symptom control with treatment, however, a small number of patients may have ongoing symptoms despite treatment. Continue reading to discover stem cell research previously funded by Guts UK.

Why is it important to raise awareness of achalasia?

Unfortunately, when it comes to upper gastrointestinal conditions such as achalasia, they are often overlooked and misunderstood. At Guts UK charity, we are dedicated to raising vital awareness to change this.

Ian’s achalasia story

“My symptoms began around February 2022, starting with difficulty swallowing vegetables and regurgitating food. Over time, it worsened with every meal, and I lost a lot of weight quickly, which left me feeling drained.

I wondered if I would ever be able to eat normally again. It felt like a grieving period. Grieving that my relationship with food and drink would never be the same.”

Continue Ian’s story here.

Leanne’s achalasia story

“I was diagnosed with achalasia when I was ten. I had a barium swallow test (a test that involves drinking a white liquid called barium that highlights the outline of the oesophagus, the food pipe), which came up through my nose. I remember crying and feeling so embarrassed, wondering what was wrong with my body…

I’ve accepted it. I’ve had achalasia for 25 years, and my oesophagus is exhausted. If I’d been diagnosed later, maybe I could’ve kept my oesophagus for life. But now, after all the procedures and struggles with eating, it’s taken its toll.”

Continue Leanne’s story here.

Does Guts UK fund any research into achalasia?

It’s vital that we help those like Dannii and James. We fund crucial research to help understand and treat achalasia and gastroparesis. Guts UK is proud to have funded stem cell research into achalasia and gastroparesis.

We funded research by Dr Conor McCann at University College London, where he explored whether it is possible to replace damaged nerve cells by transplanting new ‘donor’ stem cells into the relevant part of the gut. Though the research is still in its early stages, the results were hopeful and the research has continued in other centres worldwide.

“This project has provided some promising initial findings that stem cell-based treatments could be a future treatment for conditions like achalasia and gastroparesis. I’m incredibly grateful to Guts UK for their funding and support. The fellowship I was awarded by Guts UK not only gave me a platform to begin this important research, but it allowed me to really drive it forward. From this, I was able to apply for more grants to help us develop the lab further and acquire skilled personnel. Guts UK really helped to lift this research off the ground.” – Dr Conor McCann.

Where can I find more information on achalasia?

Our patient information section is home to our expert, evidence-based information on achalasia.

How can I help?

You can help us raise vital awareness of achalasia by:

• Following us on social media and sharing our awareness and information posts during the month itself. You never know who we might reach and help together. Facebook, LinkedIn, Instagram, Twitter/X.
• Share your own experience, or a loved ones experience with achalasia to your own circles, and on your own social media channels.
• Fundraise for Guts UK Charity to help us abolish the taboos surrounding digestive health, and get to grips with guts. You can fund life-changing research, and empower people to seek help sooner.

Your kindness enables us to fund research working towards earlier diagnoses, kinder treatments and ultimately, a cure. Support Guts UK today. Thank you.