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'I was on borrowed time': Woman gets life-saving neck surgery for rare genetic condition

PUBLISHED: 14:44 16 November 2019 | UPDATED: 14:44 16 November 2019

Karen Pugh travelled to Barcelona for life saving neck surgery. Picture: Ella Wilkinson

Karen Pugh travelled to Barcelona for life saving neck surgery. Picture: Ella Wilkinson

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A woman left in danger of internal decapitation by a genetic condition is on the road to recovery following life-saving surgery.

Karen Pugh had to travel to Spain for life saving surgery on her neck, pictured with her husband Andy. Picture: Ella WilkinsonKaren Pugh had to travel to Spain for life saving surgery on her neck, pictured with her husband Andy. Picture: Ella Wilkinson

Karen Pugh from Taverham was diagnosed with Ehlers-Danlos syndrome (EDS) in 2014, a condition which weakened the ligaments in her neck and left her unable to support her own head.

While surgery to strengthen her neck was available, she faced stumping up £80,000 and travelling to Spain for the procedure.

But fundraising help from the communities in Taverham and Wymondham - including an anonymous donor who put £60,000 into the pot - she was able to go to Barcelona for the surgery in October and is now recuperating at home.

Mrs Pugh, 52, said: "My neck was so unstable that I really was on borrowed time. I was so thankful that we got the money in as quickly as we did."

EDS affects around one in 500 people, but diagnosis rates are poor so the actual number is likely to be higher.

Before the surgery, Mrs Pugh said her neck was so weak that her head was "like a watermelon on a cocktail stick".

She was in constant danger of paralysis or death and had to wear a neck brace at all times.

She said: "Everyone else's connective tissue is like elastic but mine is like Blu-tack. They actually had to screw my neck together because it was falling apart. It would have crushed my spinal cord every time I moved my head."

She spent 12 hours on the operating table - around five hours longer than anticipated - but the surgery was a success.

While she is no longer able to move her neck independently or open her mouth too wide, the risk of death or paralysis from her condition has been eradicated.

"There are no words for it. It is just amazing," she said.

She expressed heartfelt thanks for all those who sky-dived, took up sporting challenges and had their heads shaved to raise money for the surgery, flights and AirBnB accommodation for the three weeks she and husband Andy were in Spain.

"We weren't sure we could pay for the accommodation and flights, but two girls did a sky dive which paid for that. It was like there was an angel watching over us," she said.

"I was crocheting and drawing pictures to say thank you to people."

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