A mum who enjoyed an active life is now battling a painful disease which has left her neck muscles so damaged she needs a brace to hold her head up.
Kate Mallinson was diagnosed Elher-Danlos (EDS), a group of hereditary disorders that cause abnormal collagen function and affect the body's connective tissues, in June this year.
But the 45-year-old has been experiencing a range of excruciatingly painful and life-limiting symptoms for 14 years and the condition is only getting worse.
She says her life is now just an "existence", reports Yorkshire Live.
The body's connective tissues are hugely important as they provide strength and flexibility to the skin, bones, blood vessels, and other internal organs.
And although symptoms of EDS are unique, in Kate's case, the disorder has ravaged her neck muscles and ligaments, leaving her unable to hold her head up.
She said: "It is getting worse every couple of weeks. The symptoms are more severe. I face bad days.
"But there are a lot more bad days now."
Kate, who lives in Doncaster, says EDS has forced her to stop working altogether, because of the intense pain and now her husband can't work as she needs around the clock care.
She has also halted progress towards her PhD due to health constraints.
An active person who loved the outdoors, Kate's life has ground to a halt due to frequent dizziness, sickness, shooting head pain, nausea and intense neck and facial pain.
Over the years, she has required five surgeries and a joint replacement.
Despite this, she sometimes has to snap her jaw back into into place.
She said: "I still get dislocating on the right side of my jaw and have to often 'clunk' this back into place
"I have a restricted diet, as I have to be careful with how I eat, along with brain fog and numb fingers and toes."
Kate, who must wear a neck brace to prevent her head from wobbling, says her illness has cost her more than just her job, and her career.
She said: "I live an existence, not a life. I am missing life as it goes on around me.
"I have missed so many special social events, weddings, Christmas parties, simple coffee and cake with friends, and a cup of tea at a friend’s house because I am laid in bed in pain, not daring to move my head because I will vomit.
"I have sore ulcers, bowel and bladder weakness, lack of coordination and ultimately, like my brain isn't working
"I have many days where I have totally run out of strength and there is just no more fight in me to take another breath."
Inevitably Kate's illness has an emotional impact on her loved ones.
Her husband Roy said: "I often wake in the night to my wife laying on the bathroom floor, inconsolable in pain, and vomiting.
"I hate that there is nothing I can do to take her pain away. I feel such helplessness that I can’t take away the horrific pain from the woman I love.”
Kate has been posting video updates on her YouTube channel which hopes to show the reality of EDS.
Although appearing upbeat in earlier posts, Kate's last post on September 2 shows her in a frail condition.
Kate's only hope now is to undergo cranio-cervical surgery, which involves fitting a metal brace onto her skull and attaching this to her spine, which would then offer support for her neck.
The procedure will not cure Kate, but will help alleviate her symptoms.
Kate said: "No one should have to live this life in such unbearable pain, but this surgery can dramatically improve my life."
She said the operation could help her be the mum she'd love to be: "I want to see my son grow up and enjoy some of his milestones with him, not from the side-lines with him telling me all about his ‘adventures’ when he gets home."
But, the surgery, which is not covered by the NHS, will cost Kate £45,000 which she does not have.
She has since launched a fundraising campaign, which has raised £7,700 so far.
Whatever happens, says Kate, she'll on fighting for the sake of her family.
She said: "When the pain is unbearable, I think of my beautiful family and friends who give me a reason to fight another day."
