I have to stand up to eat – otherwise I will suffocate from an extremely rare condition

A woman with an extremely rare condition who must stand while eating and drinking or risk choking is hoping surgery will help her feel “normal” again.

Elise Baynard, 25, was diagnosed with achalasia – a rare swallowing condition that affects the esophagus.

The condition has made it “almost impossible” for her to eat or drink normally, and Elise finds herself snacking or being sick up to 60 times a day.

It started in January 2020, when she suddenly struggled to swallow and felt a tight pressure in her chest.

The GP suggested it was acid reflux and gave her medication – but her throat problems continued to worsen.

She found herself struggling to swallow foods like bread and pasta, and then fluids started to “regurgitate”.

Elise was referred to a gastroenterologist – who specializes in the digestive system – in 2021 for further testing.

She felt “bare” for years as her condition worsened, until she was finally referred to a doctor in London, who diagnosed her in November 2024.

Elise is still on a very restricted diet – mainly consuming cereal soaked in milk and crisps – and as a result, she has dropped seven stone in weight.

She hopes a specialist operation called peroral endoscopic myotomy (POEM) – which widens the lower part of the esophagus – will help her eat normally again, but she faces a “long wait” for a referral from her specialist .

Elise, a healthcare worker, from Dover, Kent, said: “I was completely blown away by the situation.

“I never had problems swallowing before.

“I have good days and bad days, but I never know what they will be.

“I can’t sit down when I eat, I have to stand up, so the food actually falls out.

“One side effect is an esophageal spasm – pain in my jaw, neck and back.

“It literally feels like having a heart attack.

“Some days I’m crying on the floor in pain.

“It’s not a death sentence, but there’s no way to live.”

Elise had just moved into her new flat in Dover, Kent, in January 2020 when her health problems began.

At first, she felt a tight pressure in her chest and struggled to swallow food or burp.

The GP suggested it was acid reflux, but the medication wasn’t helping.

She was eventually sent for an endoscopy – a camera down the throat – but the results came back normal.

Elise was referred to a specialist in January 2021 but felt “frustrated” by the lack of communication.

“I never met the specialist in person, everything was over the phone,” she said.

“All the while, my condition kept getting worse.

“There was less food I could eat – I was throwing up food every day.

“I can’t eat things like bread or pasta because they get stuck and I end up regurgitating them.

“One day I got sick about 63 times.

“Then it was liquids I couldn’t swallow.

“I would wake up in the night for water and it would come right back.

“I was losing weight rapidly and developing a fear of eating.”

After seeing the doctor, Elise was referred to another specialist in London in November 2024.

The doctor “immediately” recognized her symptoms as achalasia.

They performed a manometry test to confirm the diagnosis – which involved examining the movement of the muscles in the throat.

In people with this condition, the muscles of the esophagus do not contract properly and do not help food move down to the stomach.

Elise said: “I have no activity in my throat – it’s basically broken.

“They don’t know why it happened.

“It could have been genetic or stress, or a dormant virus.

“There’s no way to really know.

“It was good to finally get a diagnosis.”

Elsie has done a lot of research and believes her best chance of eating “normally” again is to undergo a procedure called peroral endoscopic myotomy (POEM).

It involves cutting the muscles along the lining of the lower esophagus – widening the space for food to pass into the stomach.

Without it, Elise fears she won’t be able to live a “normal” life again.

She said: “I have to wait for my specialist to refer me for the procedure.

“But it took years to get a diagnosis – I don’t know how long that will take.

“I am desperate for the procedure.

“It’s always on my mind and I’m developing a fear of eating.

“It affects every part of my life.

“I can’t go out for food and drinks with friends in case I’m sick, or I have to make sure I’m always near a bathroom.

“There’s very little I can eat and I stick to very bland snacks like cereal with milk or crisps.

“I really want to shed light on this condition because it is difficult to diagnose.

“Also, we hope it will prompt doctors to act more quickly.”