A ‘real life hunchback’ riddled with 100 tumours is refusing to hide her curved spine any longer.
Liz Barton, 47, from Richmond, Yorkshire, suffers from a genetic condition that has left her with more than 100 non-cancerous lumps all over her body.
At the age of 16, doctors discovered a golf ball-sized tumour on her spinal cord.
After having the tumour removed, Ms Barton woke from the operation to find her spinal cord twisted 100 degrees in a condition known as kyphotic spine.
The mother-of-three said: ‘It’s made me feel like a real life hunchback and at times I feel like a freak. I have tried to stay indoors as much as I can over the years to avoid stares from strangers but I don’t want to hide anymore.’
Her twisted spine arose after surgery to remove a tumour due to the genetic disorder NF1
WHAT IS A KYPHOTIC SPINE?
A kyphotic curve usually occurs in the chest area of the spine, making it resemble a ‘C’ shape.
In non-severe cases the effects are usually limited to the spine’s appearance, however, it can cause nerve problems and chronic pain.
This can occur at birth, following an injury, post-surgery or as a result of osteoporosis.
If surgery is the cause, a kyhpotic spine usually comes about when the procedure does not heal as intended.
A second operation can correct the condition in some cases.
Source: University of Maryland Medical Center
Ms Barton, who is unable to work, claims her life changed forever the day of her operation and, despite hiding the condition for most of her life, she has decided to finally show the world her hunchback.
She said: ‘Although the largest tumour was removed, I was left with my spine entirely bent and sticking out of my back for the rest of my life.
‘It’s made me feel like a real life hunchback and at times I feel like a freak.
‘I have tried to stay indoors as much as I can over the years to avoid stares from strangers but I don’t want to hide anymore.’
The cause of the tumours is a genetic condition, known as neurofibromatosis (NF1), which results in the growth of non-cancerous lumps all over a sufferer’s body.
Ms Barton said: ‘Most of the tumours on my body feel like hard peas underneath my skin – I can pinch and wobble them between my fingers.
Her three children, Elliot, 14, Joshua, 21, and Lucy, 16, have inherited NF1 from their mother. Unable to work, she relies on her son to help her cook, wash and even carry things
She stayed indoors to avoid cruel strangers’ stares for years, but refuses to hide any longer
Ms Barton’s confidence has been affected as she worries friends do not want her in pictures
WHAT IS NEUROFIBROMATOSIS TYPE 1?
Neurofibromatosis type 1 (NF1) is a common genetic condition that affects one in 3,000 people in the UK to some extent.
It is caused by a genetic mutation that affects nerve tissue growth.
Around half of cases are inherited from a parent and the other half occur spontaneously.
Early symptoms include flat brown birthmarks, and lumps and bumps in unusual places.
It is also associated with mild learning difficulties.
Most people with NF1 are otherwise healthy and live to a normal life expectancy.
There is no cure.
Surgery can be performed to remove the benign growths.
Source: The Neuro Foundation
‘I know they are in my head too as I can feel them.
‘When I was 16, I was leaving school when I suddenly couldn’t feel my legs and my speech slurred.
She said: ‘I was sped away in an ambulance to the hospital where they discovered a tumour the size of a golf ball was sitting literally on my spinal cord.
‘I had an emergency operation but when I woke up, my spine was completely twisted.
‘It has a 100 degree curve.’
The aftermath of the operation has had a huge impact on every aspect of Ms Barton’s life.
She said: ‘Since the tumour grew on my spine, it has been extremely difficult doing anything as every movement is painful.
‘I feel like my better looking friends won’t invite me into photos with them because I’m so small and hunched and it will ruin the photo.
‘I even heard a delivery man call me “little lass with the hump” whilst speaking to someone outside my door.
‘It has affected my self confidence massively but I hope sharing my story helps others speak out too.’
Ms Barton is an administrator for a Facebook group that helps other sufferers.
NF1 has also affected her development, impacting her memory and reducing her hearing
Even showering is painful, as NF1 makes sufferers’ skin sensitive to hot water, she says
Sitting down is particularly uncomfortable, forcing Ms Barton to perch at the edge of seats
She said: ‘I don’t want to hide away anymore, I want to educate people on my condition.’
‘I didn’t start maturing until I was about 17 – I was very immature and young for my age.
‘I couldn’t even hold a pen or pencil properly in school.
‘Neurofibromatosis also affects my memory too.
‘I have hearing difficulties so I can find it very hard to understand people.
‘But my confidence has grown since then.
She said: ‘I feel sorry for my son as he helps me with absolutely everything.
‘I can’t bend down to get something out of the oven, I can’t do my washing, I can’t carry a basket and I can’t even sit on a normal chair or bar stool in a pub.
Sharing her story on Facebook, Ms Barton hopes she can offer support to other sufferers
Although passed between generations, Ms Barton says her family cope with their NF1
‘The seats everywhere I go is torture, I often try to perk myself at the end of it if I have to.
‘I can’t lay down properly because of my spine either, and it hurts to shower as NF1 makes my skin sensitive.
‘It’s horrible, painful and uncomfortable.’
Ms Barton’s NF1 has also been passed on to her children, with her son Elliot, 14, and daughter Lucy, 16, both inheriting the condition. The family also suspects it may affect Ms Barton’s eldest son Joshua, 21.
She said : ‘My mum had NF1, my grandmother had NF1 and my great-great grandmother had NF1.
‘Now all my children have it too.
‘Elliot has hard tumours underneath his stomach and complains when they hurt.
‘Lucy has tumours in her brain.
She said: ‘Joshua is convinced he doesn’t have it but we aren’t too sure.
‘My children help me with everything and have been amazing, I can’t do much things myself.
‘It’s really just been a curse for all my family but we are all so close and together, we can get through anything.’