Mother-of-two, 51, is living on a knife-edge with rare genetic condition that means she could be 'internally decapitated' at any moment
- Karen Scott, 51, was diagnosed with craniocervical instability in January 2019
- Married mum-of-two cannot leave her house without a neck brace or wheelchair
- Businesswoman had to quit job as a company director due to pain of condition
A successful businesswoman is terrified after being diagnosed with a rare genetic condition that's means she means she could be 'internally decapitated' at any time.
Mum-of-two Karen Scott was diagnosed with craniocervical instability in January 2019.
Ever since, the married 51-year-old has been living on a knife edge and is unable to leave the house without a neck brace or wheelchair.
Mum-of-two Karen Scott, 51, was diagnosed with craniocervical instability in January 2019
The finance director, from Hartfield, East Sussex, had to quit her job as a company director three years ago after the condition - which she claims took her a lifetime to diagnose - left her in agony.
Karen said: 'It feels like my head is crashing down. It's almost like my head is a bowling ball and I can't support it.
'It hurts my entire body, the pain is horrendous.
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'I've lost two inches of height over the last eight years.'
Karen first discovered she had the illness after also being diagnosed with Ehlers-Danlos Syndrome, which can cause craniocervical instability, in May 2018 in London.
EDS is a condition which affects the connective tissue which holds muscle, bone and organs in place.
Mum-of-two Karen first discovered she had the illness after also being diagnosed with Ehlers-Danlos Syndrome, which can cause craniocervical instability, in May 2018 in London
Karen suffered from poor health throughout her 20s and would routinely dislocate her joints.
But she claims she spent years visiting GPs who finally diagnosed her with Myalgic Encephalomyelitis (ME) in 2003 - but did not discover the true cause.
She said: 'My health has not been good since the age of 23.
'In 2005 I was bedridden for six months
'For years I was ill, I had a knee that regularly dislocated and when I was 23 I had a virus and didn't really recover.
Karen suffered from poor health throughout her 20s and would routinely dislocate her joints
'I was constantly exhausted.'
Karen is now dependent on her husband David to get down the stairs and frequently misses out on family occasions with children Megan, 22, and Henry, 19, and grandchild Emma-Rose, two, 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.
'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.
Karen is now dependent on her husband David to get down the stairs and frequently misses out on family occasions with children Megan, 22, and Henry (pictured above) , 19, and grandchild Emma-Rose, two, because of the severe pain she suffers
'Some of their childhood has been spent with them sitting on the edge of my bed.
'I couldn't go to my daughter's 22nd birthday party because I was too ill.
'I feel like I've lost out on precious moments with my kids that most people would have.
'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 said: 'I've always been an active and positive person but I've deteriorated rapidly over the last three years'
Karen is now using GoFundMe to raise £100,000 for surgery to repair the damage to her neck.
She said: 'Without it I could die or be paralysed.
'The NHS are amazing, they've done a really good job to help me but they don'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.
Karen is now using GoFundMe to raise £100,000 for surgery to repair the damage to her neck
'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.
'As I can only walk a few steps, I rarely go out of the house without using a wheelchair.
'You don't have a lot of choice, you have 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 GoFundMe here: https://www.gofundme.com/help-karen-scott-get-treatment
