Pancreatitis: Fern Cockrell left school due to pain

Fern was admitted to hospital up to six times a year

Fern Cockrell left school at 16 without any GCSEs due to chronic pain caused by pancreatitis.

The constant pain started just a month before her exams and now, at 17, she struggles to "do literally anything".

Fern, from Barry, inherited the condition from her father who was frequently in hospital with severe stomach pains.

But a surgical procedure to remove her pancreas next week could free Fern from pain.

"It's been really hard. It's hard to do literally anything," Fern said.

Speaking of her operation, she added: "I'm more excited than nervous

"You just have to look at the positives. I just want to get my life back.

"I tend to get used to the pain but it is really hard."

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Fern had been showing symptoms of pancreatitis from when she was just 18 months old, but was given antibiotics by doctors because they thought she had urinary tract infections.

Genetic Alliance UK said more needs to be done to improve treatment, care and access of information related to rare diseases.

What is chronic pancreatitis?

• The pancreas is a small organ, located behind the stomach, that helps with digestion.

• Chronic pancreatitis is a condition where the pancreas has become permanently damaged from inflammation and stops working properly.

• The most common symptom of chronic pancreatitis is repeated episodes of severe stomach pain

• As the condition progresses, the painful episodes may become more frequent and severe. Eventually, a constant dull pain can develop in your tummy, between episodes of severe pain.

Source: NHS

Sally-Anne Ashdown, the teenager's mother, said: "Fern would be hospitalised two to six times every year before August 2016.

"She's spent birthdays in hospital, she's spent Christmas in hospital... she was hospitalised on Christmas Eve last year."

Jayne Spink, chief executive of Genetic Alliance UK, said difficulties and delays in getting a correct diagnosis for rare diseases were common.

"On average a rare disease patient receives three misdiagnoses, consults with five doctors, and waits four years before receiving correct diagnosis.

"As a consequence, as in Fern's case, this can lead to delays in getting access to the most appropriate care and treatment.

"Non-specialists aren't specifically trained to recognise and diagnose rare diseases and with over 6,000 different rare diseases, it would be unrealistic to expect every doctor to develop this expertise.

"The key is encouraging clinicians to think rare, and having in place systems that support doctors to tackle this diagnostic odyssey."