Leanne’s Story – Achalasia

Tell us a little about you

“I’m Leanne, a 34-year-old from Barnsley and a single parent to three amazing daughters. I work at Barnsley College and the Cross The Sky Theatre Company. I’m passionate about art and drama, especially helping students with disabilities to express themselves through drama and singing.”

When did your achalasia symptoms begin?

“My symptoms began when I was about eight. I’d often feel like food was stuck in my throat. By nine years old, eating became a real struggle. After a meal, I’d feel like it was stuck and then cough it up in the toilet. I was too embarrassed to speak up, and I started losing weight. Every meal seemed to come back up, and I’d run to the toilet after just a few mouthfuls.”

How did you feel as a child?

“My parents thought I was doing it on purpose. My mum was panicking and worried I was losing weight due to an eating disorder. I remember saying: “I can’t help it; it keeps trying to come up. I can’t swallow it. I can’t breathe.” I wanted to go and play out, but they said: “You’re not going outside until you’ve eaten this sandwich.” I remember standing there, and it came up onto the floor, and I was shouted at.”

“The anxiety of eating in front of others was overwhelming, especially when food would come back up. I remember being watched constantly, which made everything worse.”

When did you get your achalasia diagnosis?

“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 had a manometry test (a test that measures pressure waves in the oesophagus), which I wasn’t warned about. They tried to insert a tube through my nose. I remember screaming, begging for it to be over, and I was pinned down by my dad. After the tests, I was diagnosed with achalasia.”

What was your treatment?

“I was rushed in for a Heller myotomy (a procedure that cuts the lining of the oesophagus and stomach) as I was so malnourished. I could’ve died. I’d smell rotten food as the food stuck in my oesophagus had started to rot. The surgery seemed to help, but I still struggled to eat full meals without drinking liquids.”

When did your symptoms return?

“My symptoms returned when I was 20 and pregnant with my second child. I had another dilatation (a small balloon passed from the mouth to the sphincter and inflated to break the fibres in the sphincter), which worked for six years. By 2017, things worsened. I couldn’t swallow certain foods — pizza would get stuck for days, causing pain and pressure in my chest, along with severe reflux.

During COVID, I went between hospitals and consultants, begging for help. After tests, doctors told me, “Sorry, Leanne. There’s nothing more we can do.” They mentioned a feeding tube, and I was taken aback. I never imagined my life would come to this. As a child, I was told there was a cure. Now, I was facing end-stage achalasia with the possibility of an oesophagectomy (surgically removing some or most of the oesophagus).

In February 2022, I asked for a second opinion. The doctor suggested Botox (a temporary treatment where a substance called Botulinum toxin is injected to relax the muscle fibres in the sphincter), but it might only work for a short time. I considered POEM surgery (a camera passed through the mouth to cut muscles in the oesophagus) but there was a long wait.

By May 2022, I couldn’t swallow anything. I went seven days without eating or drinking and was admitted to the hospital. My body rejected a feeding tube, and I couldn’t take care of my kids. My daughter said: “Mummy, I don’t want you to die.” I thought about giving up. If I died, I died. I didn’t want my kids to see me suffer.

I eventually got the POEM surgery. Before the surgery, I was told: “You had surgery at ten years old. That’s the same place I want to go. If I can’t do it, I can’t help you.” I woke up in severe pain, but I was happy as I knew the surgery had been done.

Recovery took about three months. I returned to work in September and separated from my partner in October. I’m now facing the possibility of an oesophagectomy, which involves a 12-month recovery. I’m also worried about finding someone who will accept me with my condition.”

How are you now?

“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.

I think about how relationships and my children are affected. I never wanted to burden anyone with this. I don’t want my daughters to see me suffer. My 16-year-old came to an appointment even though I told her not to. She said, “I’m here for you,” and that meant everything.

It’s tough trying to stay strong every day, especially when eating is such a challenge. Some days, I can’t keep anything down, and I’m drained. I’m working full-time, and it’s a struggle. I keep going for my girls.”

Why do you want to share your story today?

“I want to raise awareness among medical professionals. When we’re admitted to the hospital, we’re often left to one side, unsure of what to do because there aren’t many specialists who know how to treat us. We need to be heard.

I also want to share my story because I felt completely alone during my darkest moments. No one understood what I was going through. I’m still here because of my girls—I have more life to live and more to give. I want to be there for others with achalasia, so I started sharing my journey on Instagram. I share everything, from the good moments to the hard ones, videos showing my reality, whether it’s a good day out with friends or a tough night where I can’t keep food down. We all have our struggles, but life is worth living.“

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.