Achalasia Action is shining a spotlight on a rare disease of the oesophagus: achalasia
Silvia Davey has a rare condition known as achlalasia and is a trustee at Achalasia Action, a charity recently formed to support people with the condition. Silvia talks to RARE Revolution about her personal experience of living with achalasia and why she and fellow members of a support group were driven to formalise and establish the charity
I will never forget the time my first esophageal spasm hit me. The excruciating chest pain and difficulties breathing convinced me I was having a heart attack. I was scared I might die. Only after getting home from accident and emergency, having been told I’d had a panic attack, did I start joining the dots together. Could this pain have been caused by my achalasia?
I’d had an operation for the condition five years earlier, yet not a single clinician had mentioned that I might develop heart attack like spasms down the line!
Achalasia is a rare condition of the food pipe (the oesophagus) where the muscles and nerves that help propel food down towards the stomach stop working properly. It affects around 6,000 people in the UK, and causes a number of different symptoms, including the inability to swallow food (dysphagia), chest pain, spasms, aspiration and regurgitation of food. Ultimately, achalasia can cause severe weight loss and malnutrition, lung infections, and impact on a person’s wellbeing and mental health.
Given its rarity, and its disparate symptoms, it often gets misdiagnosed. People with achalasia can experience these symptoms for many years, and even decades, before they get a correct diagnosis. Although there are no effective treatments for the condition, symptoms can be managed with lifestyle changes, or relieved by operations that open-up the entrance to the stomach (Heller myotomy or peroral endoscopic myotomy), Botox injections or balloon dilations. These solutions are not always effective, and the symptom relief may be short-lived
My story of achalasia
I developed achalasia when I was 17. After an initial misdiagnosis, where I was told I had an eating disorder, I was fortunate enough to be diagnosed in a matter of months and be operated on by one of the leading achalasia clinicians in Italy. I lived my late teens and early twenties pain free, bar the occasional bout of acid reflux. When I developed the spasms and started finding it difficult to eat again, I decided to seek further medical advice. But I was lost. Hundreds of miles away from home, in the British healthcare system, I didn’t know how to get the support I needed.
A trip to the GP was pointless: they had never treated a person with achalasia before, and I was referred to a hospital that did not have any specialists that knew about the condition. To be clear, I do not blame the GP for any of this. Awareness of achalasia is extremely poor amongst the healthcare community—it is barely researched or studied, and very few healthcare workers and clinicians have good knowledge of the condition. We know so little about it that even the exact cause of why the nerves that control the muscles of the oesophagus stop working remains unknown.
I was back to square one. Cue more Googling, and I came across the Achalasia Meetup group. Set up by Amanda Ladell (now an Achalasia Action Trustee), the group brings together people with achalasia once a month, to share experiences and exchange hints about the condition. In 2013, this group also started meeting twice a year with members of the Oesophageal Patients Association (OPA), to learn more about the disease under the guidance of consultant surgeon Majid Hashemi from University College Hospital, and other researchers and academics specialising in the condition. These meetings, and the kindness of all the members that attend them, were immensely helpful at the time and have continued to be throughout the years. They have helped me identify a specialised surgeon, have armed me with numerous diet hints, and have empowered me to make changes to my lifestyle that have dramatically improved my symptoms.
Achalasia Action was born
In 2019, several the group’s members decided to come together and formalise the group’s activity as a registered charity, Achalasia Action. The charity’s purposes include:
- To provide education and raise public awareness about achalasia and associated conditions
- To alleviate physical or mental distress of persons with achalasia including their friends and families
- To encourage and support research into achalasia for the public benefit.
Under the guidance of its chair Alan Moss and seven trustees, the charity is now officially registered with the Charity Commission and has a website where people with achalasia can access support information and the latest achalasia-related news. It continues running its monthly and bi-yearly patient meetings, provides informal peer support to those in need, and has helped support regional achalasia meet-up groups across the country. It has also grown its social media presence and has started accepting generous donations from its supporters.
If you’d like to find out more about achalasia and the charity’s work, using the buttons below you can visit Achalasia Action’s website. We also have a Facebook page, Facebook group, and you can follow us on Twitter. If you’d like to support our charity, you can donate here. If you have any questions, or would like to volunteer, we would love to hear from you on