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Maghera teen funding life-changing operation after ‘no burp syndrome’ diagnosis

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Natalia Skurzewska was diagnosed with Retrograde Cricopharyngeus Dysfunction (RCPD), also known as “no burp syndrome”

A Co Derry teenager has been forced to fundraise towards a life-changing operation after being diagnosed with a rare condition that prevents her from burping.

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Natalia Skurzewska, 18 and from Maghera, was diagnosed with Retrograde Cricopharyngeus Dysfunction (RCPD), also known as “no burp syndrome,” after two years of trying to get a diagnosis. RCPD is a condition where the cricopharyngeus muscle, located in the throat, can’t relax properly.

This prevents affected individuals from burping, leading to uncomfortable and often painful symptoms like bloating, gurgling noises in the chest and throat, abdominal pain, nausea and even difficulty breathing.

RCPD is often misdiagnosed as heartburn or indigestion, meaning the medication given would be completely useless or could even worsen sufferers’ conditions.

For those like Natalia with the condition, it significantly impacts quality of life, making everyday activities both difficult and embarrassing. Natalia went to her GP for two years trying to figure out what was causing her issues until she researched her symptoms herself.

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She first noticed problems when she was 14 years-old: “I would eat and then I’d get bloated. It would hurt at times, and then there’d be gurgling noises coming like from my throat. I would also get really bad bloating and then pains in my stomach that would go right up to my chest.

“It would happen whenever I ate specific foods, like take aways, sweet stuff or drank fizzy drinks. It was so uncomfortable, especially whenever I was in school and just had to try and get through the whole day.

“I get very bad hiccups, sometimes even doubled and it gets to the point where the pain in my chest is so unbearable and I can get them four times a day.

“I went to my GP who said it was heartburn or something to do with my gut or bowels, and I told her that wasn’t the case. The doctor would give me all sorts of different medication, but they wouldn’t help.

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“I had X-rays and ultrasounds done but they couldn’t find anything. That’s when I did my own research and figured out that I have RCPD.”

Natalia, a health and social care student at Belfast Met, was recently hospitalised when her condition worsened and she found it difficult to breathe and was suffering heart palpitations.

The condition has also impacted Natalia social life and mental health: “I have also struggled with my physical appearance as RCPD makes me to feel awful about myself. Anytime I would eat, I’d get bloated and feel embarrassed from being made fun of.

“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.

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“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.”

While botox injections have shown high success rates in restoring the ability to burp, Natalia’s best option is surgery but that’s not available on the NHS. It’s available privately in either Dublin or England but at a cost of approximately £6,000.

While Botox injections have shown high success rates in restoring the ability to burp, Natalia’s best option is surgery, but that’s not available on the NHS. It’s available privately in either Dublin or England at a cost of approximately £6,000.

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“Having the surgery would mean a great deal to me. It would also mean I wouldn’t be in pain every day and could eat a meal without being that pain for the rest of the day.”

Natalia has launched a GoFundMe appeal towards her surgery and research into the condition which can be accessed here.

“Funds raised for RCPD are vital for supporting research into better diagnostic methods and treatment options, as well as providing resources for those living with the condition to access the specialised care they need to help them live a better life,” she added.

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