Maghera teen diagnosed with 'no burp syndrome' hoping to fund life-changing operation
A County Derry teenager, who suffers from an unusual condition which means she is unable to burp, is hoping to raise money to help fund a life-changing operation.
Natalia Skurzewska, from Maghera, was diagnosed with Retrograde Cricopharyngeus Dysfunction (RCPD), also known as "no burp syndrome," after living undiagnosed for two years.
The rare condition means the cricopharyngeus muscle, located in the throat, can't relax properly. This prevents affected individuals from burping, or throwing up, leading to uncomfortable and often painful symptoms like bloating, gurgling noises in the chest and throat, abdominal pain, nausea and even difficulty breathing.
It significantly impacts quality of life, making everyday activities difficult and embarrassing.
The 18 year-old first noticed problems when she was 14 years-old.
“At the start, I didn't think anything of it until it started to give me bother,” said the former St Patrick’s College, Maghera student.
“It would happen whenever I ate specific food, like fatty foods, sweet stuff or drank fizzy drinks. I would get really bad bloating and then pains in my stomach that would go right up to my chest. I try to eat the blandest food I can but the pain is constant.
“It was so uncomfortable, especially whenever I had to sit in school for the whole day and just try to get through it with no one to help me.
“It's difficult to even notice. My parents never even noticed it until I started bringing it up to them constantly. I suppose you aren’t going to notice if your child doesn't burp. You won't pay attention to it.”
Natalia went to see her doctor, however they were unable to identify the condition, which is often mistaken for heartburn or indigestion.
“I went to my GP a lot of times and all she ever told me was it was just heartburn or it was something to do with my gut. But I always knew that that wasn't the case because it just got worse every time,” she continued.
“The doctor would give me all sorts of different medication, but they wouldn't help so I decided to go and do my own research.”
In recent weeks, Natalia was hospitalised after the condition worsened and she found it difficult to breathe and was suffering heart palpitations.
She says the condition has not just had an impact on her physical health but also her mental health.
“I have struggled with my physical appearance as RCPD has always caused me to feel awful about myself as anytime I would eat, I’d get bloated and get made fun of and feel embarrassed,” Natalia continued.
“Just because of this condition, I’ve found it hard to leave my home and go out to social events, school, or just meet my family for dinner.
“Anytime I would go out with family or friends I would always feel awkward sitting there while others around me ate what they wanted.
“I would constantly get questioned if I had an eating disorder or if I’m just looking for attention, but the truth is, it’s very hard for anyone with RCPD to eat anything and I’d always go into so much pain just a few minutes after.
“I tried explaining the condition I had but honestly, people only made fun of me which made me very insecure about my body.”
Natalia, a health and social care student, said she has not met anyone who has the condition however she has carried out a lot of research into it and has discovered that an operation is available. Botox injections have also shown high success rates in restoring the ability to burp.
“Surgery is an option however it is not covered by the NHS and it is expensive. It is available in Dublin and England however it costs approximately £6,000,” she said.
Natalia has now set up an online fundraiser in a bid to help raise the funds needed for the operation.
“I want to try and save up for the surgery because it is very expensive but I wouldn't be able to do that myself considering I'm still going to school,” she said.
“Getting this operation would mean such a great deal to me. It would finally give me the relief I've been looking for from doctors constantly. It would honestly just make me feel so much better and I wouldn't be in pain every day. I would be able to eat a meal without being in pain for the rest of the day.”