Woman living with rare condition fears she could ‘decapitate’ herself as her neck is so weak – The Sun

A WIFE has told how she lives in fear that her head will drop off because her neck is so weak.

Karen Pugh, 52, has rare Ehlers-Danlos syndrome, which means its ligaments cannot fully support her head.

Karen has been warned she is in constant danger of paralysis or sudden death.

She said: “I could decapitate myself. It’s like have a watermelon balanced on a cocktail stick — I’m at a daily risk of dying.”

Karen has to wear a permanent neck brace because her skull slips back and forwards over the top of her spine when she tilts her head — compressing her brain stem.

She had to stop working in a turkey factory and cannot do tasks such as gardening.

Karen is now aiming to have a £75,000 operation to solve the problem. Her family and friends have launched fundraising activities as it is not available on the NHS.

She hopes to fly to Barcelona for private surgery to insert rods into her back to halt the daily risk of decapitation.


But it would mean she could not turn her neck any more.

Karen, who lives with husband Andy in Taverham, Norfolk,  was diagnosed with EDS — which spans 13 genetic connective tissue disorders — in 2014.

EDS  causes problems with collagen, which the body needs to hold skin, joints, blood vessels and organs in place, and is  thought to affect as few as

one in 20,000 people. Karen said healthy collagen behaves like elastic, snapping back into place —  but EDS sufferers have collagen “like Blu Tack” which does not spring back.

In Karen’s case her vertebrae dislocate and her joints are unable to support her movement.

She said: “Before this all happened I used to love  doing cross country runs. It’s hard.”

Cement mixer driver Andy, 53, said: “I've seen my darling wife go from an athletic, hard-working, fun-loving woman to someone that struggles to hold up her own head.

“She has many dislocations in her hips, knees, shoulders, etc, even her ribs. It also causes issues with her muscles and digestive system, and she is in constant pain.

“She always has a smile for her family and friends, but I see the daily struggle she has.”

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