Mum lives in fear of being ‘INTERNALLY decapitated’ by rare condition that leaves her feeling like her head is ‘crashing down’

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A TERRIFIED mum has been diagnosed with a rare genetic condition that means she could be “internally decapitated” at any time.

Karen Scott, 51, found out last month that she has craniocervical instability.

Karen's neck no longer supports her head properly - causing her extreme pain
Karen’s neck no longer supports her head properly – causing her extreme pain

The mum-of-two is unable to leave the house without a neck brace or wheelchair because the ligaments in her neck are too weak to hold her head.

“It feels as if my neck is a paper straw and my head is a bowling ball,” she says.

“It feels like my head is crashing down. It hurts my entire body, the pain is horrendous. I’ve lost two inches of height over the last eight years.”

The finance director, from Hartfield, East Sussex, had to quit her job as company director three years ago after her condition left her in agony.

"It feels as if my neck is a paper straw and my head is a bowling ball," she says.
“It feels as if my neck is a paper straw and my head is a bowling ball,” she says.

Karen first discovered that she had craniocervical instability after being also diagnosed with Ehlers-Danlos Syndrome (EDS) in May 2018.

EDS can cause craniocervical instability and it affects the connective tissue which holds muscle, bone and organs in place.

Karen says that her health has been poor since she was 23.

In 2005, she was bedridden for six months and says that she picked up a virus from which she never really recovered.

Karen has missed out on tonnes of family events with her children and grandchild due to the crippling pain
Karen has missed out on tonnes of family events with her children and grandchild due to the crippling pain

Her knee would also regularly dislocate.

She spent years visiting GPs who finally diagnosed her with Myalgic Encephalomyelitis (ME) in 2003 but they didn’t discover the true cause.

Karen is now dependent on husband David to get down the stairs, and regularly misses out on family occasions with her children and grandchild because of the severe pain she suffers.

She said: “I’ve always been an active and positive person but I’ve deteriorated rapidly over the last three years.

Karen has been suffering from ill health since she was 23
Karen has been suffering from ill health since she was 23

“I never know what I’m going to wake up to. It’s affected family life hugely.

“My kids Megan and Henry have grown up knowing that any given point I could be suddenly ill or need to lie down so it’s affected them a lot.

“Some of their childhood has been spent with them sitting on the edge of my bed.

What is Ehlers-Danlos Syndrome?

A syndrome is a group is disorders, and there are 13 individual genetic conditions that fall under the EDS umbrella.

They all affect the body’s connective tissue which is responsible for holding everything in place and providing support.

When you have EDS, your tissue becomes fragile and stretchy.

That can make you double jointed or hypermobile, as well as causing other much more serious issues.

Other symptoms can include:

  • long-term pain
  • chronic fatigue
  • dizziness
  • palpitations
  • digestive problems

Other signs can depend on the person and the type of EDS they have, although two people with the same condition might have different side effects.

“I couldn’t go to my daughter’s 22nd birthday party because I was too ill.”

Karen says she feels like she’s lost out on the precious moments with her kids that most people get to enjoy.

She's now trying to raise money to fund private surgery in Barcelona
She’s now trying to raise money to fund private surgery in Barcelona

“I’m indoors for most of the day upstairs as I don’t have a stair lift. I try to come down when my husband David is back at home so he helps me down the stairs.

“During the day I’m either resting or talking to people online but most of the day is spent in bed.”

She’s now trying to raise £100,000 to fund surgery to repair the damage to her neck.

“Without it, I could die or be paralysed.

“The NHS is amazing, it’s done a really good job to help me but it doesn’t have the resources or the neurosurgeon available to provide the surgery.

“I go through phases, sometimes I feel very blessed but occasionally I can feel very bitter.

Without surgery, she says that she could be paralysed or die
Without surgery, she says that she could be paralysed or die

“I notice and appreciate the small things. I can be stuck in bed and see something like a bird outside and it makes me smile even though most people wouldn’t notice it.”

She says that her only option is to go to Barcelona for a private operation.

With each day more, the risks involved increase.

She says that when you don’t have a lot of choice over your situation, you have to use humour to get through things.


An NHS England spokesperson said: “Despite the rarity of Ehlers Danlos syndrome the NHS does fund surgery when it is recommended by clinicians.

“However, the decision to undertake such complex procedures has to be based on whether the benefits to the individual patient outweigh the risks.”

You can donate to Karen’s surgery here.


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