A Scots teen with a rare and potentially fatal condition which causes excruciating pain when she eats is heading to Germany for a £90,000 surgery which could finally cure her.

Emma Noble, 17, was diagnosed with multiple disorders including Wilkie's Syndrome - where part of the blood supply to small intestine is obstructed - after visiting a world-renowned specialist in Leipzig earlier this year.

Her parents paid £6000 to travel to Germany to see Professor Thomas Scholbach, an expert in vascular compressions, after becoming convinced that the rare abnormality was at the root of their daughter's ordeal.


Symptoms first emerged three years ago when she began suffering inexplicable abdominal pain whenever she ate, along with bouts of vomiting and diarrhoea, and by December last year her weight had fallen so low she was no longer on the centile chart - the measurement used to evaluate children's height and weight compared to their peer group.

However, numerous tests and investigations carried out by doctors in paediatric and adult gastroenterology services at NHS Forth Valley and NHS Greater Glasgow and Clyde failed to find anything wrong with Emma, and she was eventually discharged with advice to eat "little and often".

The teenager - who had to give up school due to her illness despite previous high grades - is partly fed through a nasogastric tube connecting her nose to her stomach, and survives on a mixture of calorie and nutrient-enriched milks, yoghurts, and small quantities of solid foods.

Her mother, Debbie Noble, an NHS obstetric stenographer, said she became frustrated with suggestions that her daughter's pain may be psychosomatic, with an underlying psychiatric cause, and was disappointed that her repeated pleas for a CT angiogram - the "gold standard" diagnostic test for identifying vascular compressions - was rejected.

Mrs Noble, 52, from Denny in Falkirk, said: "You know when it's your child when there's something really wrong with them, and she was so ill.

"By this point she was coming down to us nightly, crying, crippled with pain.

"It doesn't matter whether she eats a grape or a slice pizza, she's in agony, but this went on and on and all the tests came back negative, so that was it: the message was basically 'look, we've found nothing wrong, we're done here'.

"And by that point, they're starting to go down the psychiatric route.

"I thought 'we can't go on like this - I can't keep seeing Emma like this'. 

"I had been doing my own research, looking up medical journals, and I came across something called vascular compressions and Emma ticked every single box.

"But the problem is it's quite rare."

Emma Noble with her mother Debbie (left) and with mother Debbie and twin sister, Abbie (right)Emma Noble with her mother Debbie (left) and with mother Debbie and twin sister, Abbie (right) (Image: Supplied)

Following recommendations from online support groups, Mrs Noble contacted Prof Scholbach, whose clinic in Germany attracts patients from all over the world.

Emma was offered a consultation the following week. 

Detailed imaging revealed severe digestive complications.

"You could see the food passing into the duodenum [small intestine] and bouncing back - that's when the pain was at its worst," said Mrs Noble.

"It just would not go through. When Emma lay on her left-hand side it would go through a tiny millimetre at a time, but it took hours and hours for anything to get through."

In addition to Wilkie's Syndrome - which has a 33% fatality rate if left untreated, and is sometimes only detected post-mortem - Emma was also found to have six associated conditions.

These included Nutcracker Syndrome - where a vein in the kidney is squeezed, increasing the risk of renal damage - and May-Thurner Syndrome, a rare vascular condition affecting the pelvis.

She is also at increased risk of blood clots.

Emma's case is considered severe, but potentially curable.

The family has been referred to a surgeon in Düsseldorf who specialises in correcting vascular compressions.

The procedure, expected to take place in August, will take between eight to 12 hours and costs around £90,000.

Prof Dr Thomas Scholbach is known internationally for his expertise in vascular compressionProf Dr Thomas Scholbach is known internationally for his expertise in vascular compression (Image: ProfScholbach)

Mrs Noble said: "What he would do is go in, fix all of her conditions in one operation.

"It's a pretty big surgery, but there's an 80% chance of curing it which was music to our ears.

"We were crying with happiness just to get a diagnosis after being knocked back all the time."

Mrs Noble said the family have been "overwhelmed by kindness" after launching a GoFundMe appeal which has so far raised more than £40,000 towards Emma's operation.

A local businessman has also pledged to cover half of the remaining costs if the McDonald's franchise in Camelon - where Emma works part-time - puts up the rest.

Emma, who lives with her mother, father Sandy, and twin sister Abbie, also hopes to train as a paediatric nurse in future and launch a charitable foundation to help fund treatment for other patients with the same complications.

Mrs Noble said: "Her life was turned upside down by this. 

"She's such a kind, caring girl, but she feels as though she was being left to have a slow painful death and she doesn't want anyone else to go through that."