Shawn’s Story – Achalasia

Tell us a little about you

“I’m Shawn. I live in Cheshire with my wife and two daughters. We enjoy hiking, mountain biking, running, and spending time outdoors as a family.”

Can you describe when your symptoms started and what they were?

“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. The spasms frightened me. Due to my symptoms and time in hospital, I missed a lot of school, which affected my learning.”

Talk us through your early journey with achalasia. 

“For a long time, no one knew what was wrong. I went to various doctors and hospitals for tests, including barium swallows (a test that involves drinking a white liquid called barium that highlights the outline of the oesophagus, the food pipe), chest X-rays, and endoscopies (a thin tube with a small camera on the end is inserted via the mouth).

I felt ill nearly every day, and it was tough. I underwent manometry tests (a test that measures pressure waves in the oesophagus), one requiring a portable device for a week while at school. At age 14, I was diagnosed with achalasia.“

What happened after your diagnosis? 

“Being one of the youngest achalasia patients at the time, I felt overwhelmed as doctors from across the country examined me. I underwent two or three dilatations (a small balloon passed from the mouth to break the oesophageal sphincter fibres) annually for several years. However, my oesophagus frequently constricted again, causing persistent issues.”

Are there any hospital experiences that you particularly remember? 

“In 1987, when the dilatations stopped working, I had a Heller’s Myotomy (a surgical procedure that cuts the lining of the oesophagus and stomach). At that time, keyhole surgery was not available, so it was a major operation. Recovery was tough; I spent two and a half weeks in the hospital and needed additional time off from school. It was overwhelming at such a young age.“

What happened after the surgery? 

“After surgery, I had 12 to 18 months of mostly pain-free eating, but the spasms worsened, and my symptoms returned. My hospital said they could not do more and referred me to a specialist at another hospital. For two to three years, I had tests and dilatations with no improvement. I learned to cope independently and drifted from the medical system for 10 to 15 years.”

What changed in your 30s? 

“In my early 30s, I struggled with food getting stuck and frequent spasms that left me sick for days. I saw my GP, and was referred to the hospital for tests, discussing a second Heller’s Myotomy. However, due to adhesions (scar tissue which forms between two organs and tissue after surgery), they chose not to proceed because of the risks. I completely overhauled my lifestyle, prioritising exercise and healthy eating. Each day, I focus on steps that help my achalasia and long-term health.“

How are you now? 

“I have officially had achalasia for 38 years. It’s now at end-stage, which means no peristalsis (when the food pipe contracts, creating a wave-like movement that pushes the food down the digestive tract) and a mega-oesophagus (where the oesophagus is bigger than the stomach).

I can only eat by drinking a large amount of liquid with meals. I might need an oesophagectomy in the future (which entails oesophagus removal), and I’m concerned about developing oesophageal cancer due to achalasia. Despite my condition, my doctors are surprised that I live a fairly normal life.”

How do you stay positive? 

“I maintain a positive mindset, follow a healthy lifestyle, and refuse to give up. Giving up worsens things. Despite having end-stage achalasia, I don’t dwell on fears. My children would sense my worries, so I stay positive for them! I appreciate the hashtag #AchalasiaWarriors on social media, which reflects our ongoing fight against this condition. We battle an invisible demon inside us.“

Why are you sharing your story?  

“For years, I hesitated to share my story, fearing I might be criticised for complaining about my illness. However, seeing charities like Guts UK working to raise awareness and fund research has motivated me to speak up. Sharing my experience helps shine a light on this often-misunderstood disease. It’s time to raise our voices, increase awareness, and advocate for all affected by achalasia. Together, we can promote understanding and push for the support and treatment advances people need.”

What are your hopes for the future? 

“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.”

What you can do:

If you are interested in supporting our work in upper GI conditions, which has been underfunded for too long, please donate today. Discover the stem cell research we have funded into achalasia here.