No-burp syndrome sufferer launches awareness petition

A mum-of-two has started a petition to raise awareness of a rare condition that left her unable to burp for most of her life.

Gemma Renwick, 43, from Eastleigh in Hampshire, has Retrograde Cricopharyngeus Dysfunction (R-CPD) that is also known as no-burp syndrome.

Normally when people eat or drink, they swallow small amounts of air that the body releases through a burp. In people with R-CPD, a ring of muscle at the top of the food pipe fails to relax and traps gas inside.

Renwick said the symptoms can be "just horrendous" and explained "there's not ordinary bloating, it just gets progressively worse through the day and there's pain in my chest too, where the air builds up".

R-CPD was only named in 2019 and Renwick said doctors were not aware of it and she had previously been told she had acid reflux.

She said it was when she spotted a post on social mentioning no-burp syndrome that she realised she might have it.

Renwick sought a private diagnosis and underwent a procedure where botox was injected into her throat to relax the cricopharnyeus muscle allowing gas to escape.

This is not a guaranteed cure but she said it has worked for her for now.

"I was really nervous as there are risks to the procedure and it's not something that is certain but I can finally burp, it's amazing. I've got no bloating or pain anymore," she explained.

Consultant ENT Surgeon Joseph Sinnott said: "I see people that have had this for decades and they just thought this was something that they had to live with.

"There are good treatment options out there. In the first instance I would look at conservative measures such as learning how to burp again.

"However, in the correct patients with realistic expectations, there is a new treatment emerging which involves botox into the upper oesophageal muscle.

"Not everyone gets a really good outcome though, there are risks involved and it's important to have realistic expectations."

Last week Little Mix singer Jade Thirlwall revealed she suffered from the condition.

Renwick said that was a revelation: "I couldn't believe it. If someone like Jade has it too, and is talking about it, then hopefully that will really help to raise awareness."

And she has turned to social media herself to share her journey.

"I've received so many messages from people who tell me they have the same symptoms and suddenly they feel seen," she said.

A petition started by Renwick calling for better recognition and diagnosis of R-CPD has 6,500 signatures so far.

"My ultimate goal is to get this listed as a recognised condition on the NHS website. It's still not known enough," she added.

An NHS England spokesperson said that the National Institute for Health and Clinical Excellence (NICE) issues guidelines for the services suitable for patients.

In a previous statement the NHS said "clinical evidence of this condition is extremely limited due to the small number of people who have come forward with it".

Renwick meanwhile said she is committed to campaigning for R-CPD to be more widely recognised, so other sufferers can be diagnosed more quickly in the future.