Achalasia Awareness Month

What is achalasia?

Achalasia prevents food and fluid from passing down the oesophagus and entering the stomach. This results in difficulty swallowing. Achalasia is a condition that is specific to the oesophagus and doesn’t affect any other parts of the gut.

It’s a very rare digestive condition, with approximately 2 to 3 in every 200,000 people diagnosed every year.

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 feeling as if it is stuck in the oesophagus after eating, causing chest discomfort or pain, and 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, which might lead to chest infections if the food goes back down the wrong way and gets 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 experiences and the condition is diagnosed incidentally during tests for different conditions.

The symptoms of achalasia may be present for months or even years before people seek help. Because of the non-specific nature of symptoms and the rarity of the condition, there can often be a delay in diagnosis of achalasia.

How can achalasia affect you?

The symptoms of achalasia can have an impact on people’s general wellbeing. 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.

Where can I find more information on achalasia?

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

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.

Hear from people living with achalasia

“My symptoms began around age ten. Food often got stuck, making me cautious about eating due to choking fears. I experienced severe muscle spasms in my oesophagus, triggering intense acid reflux and sickness that left me drained for days. For a long time, no one knew what was wrong.

I am determined to fight against this disease, not just for myself but to help shape my children’s future. I hope a cure for achalasia emerges so that future generations, especially children, don’t have to go through what I did.” – Shawn

Continue reading Shawn’s story here.

“On my birthday in 2022, I received my achalasia diagnosis… Not quite the present I had in mind! In the months before diagnosis, I underwent numerous medical tests.

During my toughest times, reading about others going through the same gave me the encouragement I needed. I also want people to know that, although there is no cure, there are procedures that can help. It’s important to explore medical help and reach out to your doctor if you have any symptoms of achalasia or something doesn’t feel right.” – Stephen

Continue reading Stephen’s story here.

Does Guts UK fund any research into achalasia?

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.

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 of September. You never know who we might reach and help together. Find us on Facebook, LinkedIn and Instagram.
• Sharing yours or a loved ones experience with achalasia on your own social media accounts and beyond. Submit your interest in sharing your story with Guts UK, our gutsy community here.
• Fundraising for Guts UK Charity to help us abolish the taboo surrounding digestive health. You can help us to provide information and support when it’s needed most, and fund life-changing medical research into the digestive system.