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'I could decapitate myself' - Woman with rare condition on living in constant danger

PUBLISHED: 08:55 03 July 2019 | UPDATED: 11:09 03 July 2019

Karen Pugh, Taverham, Norwich. Picture: Jamie Honeywood

Karen Pugh, Taverham, Norwich. Picture: Jamie Honeywood

Jamie Honeywood Archant Norwich Norfolk

A Norfolk woman lives in fear of being internally decapitated at any time due to a rare condition which has no treatment in the UK.

Karen Pugh with her husband Andy, Taverham, Norwich. Picture: Jamie HoneywoodKaren Pugh with her husband Andy, Taverham, Norwich. Picture: Jamie Honeywood

Karen Pugh, 52, was diagnosed with Ehlers-Danlos syndrome (EDS) in 2014.

The condition, which is caused by faulty genes, means the ligaments in her neck are unable to support her head, and Mrs Pugh's skull slips back and forwards over the top of her spine when she tilts her head, which compresses her brain stem.

It means she is in constant danger of paralysis or sudden death, and is forced to wear a neck brace at all times.

"I could decapitate myself," said Mrs Pugh, who used to work for Bernard Matthews and lives in Taverham. "But for people with EDS, a lot of the time, because it's so rare, we're seen as hypochondriacs."

Karen Pugh, Taverham, Norwich. Picture: Jamie HoneywoodKaren Pugh, Taverham, Norwich. Picture: Jamie Honeywood

Mrs Pugh diagnosis came two years after she suffered a fall from which she did not seem to be able to recover from. But she said looking back now she had always had symptoms she now knows are associated with EDS, such as dislocating joints.

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EDS causes problems with collagen, which is what the body uses to hold skin, joints, blood vessels, and other major organs in place. Mrs Pugh said while healthy collagen behaves like an elastic band, snapping back into place, those with EDS have collagen like "blue tack".

"It doesn't go back," she said.

It was not until she spoke to another sufferer recently, who had a pioneering operation in Barcelona, Spain, to stabilise her skull, that Mrs Pugh truly realised the risk.

She said: "It's something that I think you get used to but I've been speaking to a lady who had the surgery, I've been in contact with her and Dr Gilete [the surgeon] said he very rarely sees 50-year-olds over there because they've either had the surgery or they are dead. That's when it hit me."

Mrs Pugh's family and friends are aiming to raise £75,000 for her to have the same surgery, which would stabilise her skull and neck and stop the risk to her life.

Already husband Andy and a group of 14 friends took on a 20-mile sponsored walk, and friends Laura Youngman and Terina Robinson will be shaving their heads for the fund.

To follow the fundraising bid, or to donate, search Help Karen Pugh Get Treatment on Facebook or visit bit.ly/KarenPugh

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