Paula Jackson was diagnosed with Craniocervical Instability when she was just 18-years-old – a condition which affects the connection between the head and the neck causing severe genetic hypermobility issues.
The 36-year-old Oxford graduate did not let her condition stop her and went on to become a ballroom dancer.
However, nine years ago she contracted a virus which broke down the ligaments in her neck and head area over time and caused her difficulty with basic bodily functions.
Paula now has a full-time carer who helps her with day-to-day tasks and desperately needs spinal surgery which is only available in seven countries, including the UK.
She now has just six weeks left to raise a hefty £100,000 for her surgery in the UK before the damage becomes permanent.
Speaking today, Paula said: “I had had problems previously with developing a post viral illness after getting Epstein-Barr glandular fever and that was similar to Long-Covid – a post viral illness.
“I had been experiencing that for a few years, but then suddenly in a few weeks I went from working full time dancing three times a week being involved in ballroom dancing competitions, involvement in my local church and a very active social life to not being able to walk around and not being able to work.
“It felt like I’d completely lost my stamina and my muscles felt weak, I was breathless, I couldn’t understand what had happened.
“Taking a shower would leave me having to rest afterwards, talking was painful, I got terrible headaches, I stopped being able to take in the trees and garden…it was like it was too much to process.
“A spoon on a bowl in another room would feel like a physical assault to my brain and be painful. I just knew I suddenly felt like the simplest task just walking down the road or climbing stairs was too difficult for me.
“The international neurosurgeons I’ve consulted think that my dancing training may have suddenly exacerbated an underlying problem where I had a genetic predisposition to hypermobility – a connective-tissue disorder known as ehlers Danlos syndrome and that the post viral illness had slowly been breaking down my ligaments in my neck and head area over time, adding to the genetic hypermobility there.
“This meant my ligaments became too loose and weren’t holding my head on properly and caused problems to the brain stem disrupting all sorts of normal function.
Paula added: “My symptoms were quite different when this happened to just my post viral illness symptoms which was more like fatigue -this was like breathlessness, weak muscles sensitivity to light and sound and I couldn’t understand it at the time.
“So the surgeons where I am don’t recognise this condition I have which is far more subtle and takes experience in recognising and diagnosing the manifestation of this condition in people with connective tissue disorders specifically because it’s different to the manifestation in people who don’t have connective tissue disorders.
“There are only seven neurosurgeons worldwide experienced with this. It’s a problem of lack of access to people specialised in this particular version of Craniocervical Instability to recognise it and partly it’s important to see the specialists because they perform the operation a bit differently to how it would be done for a straightforward trauma case.”
Over the past month Paula has raised more than £58,000 but is in need of £100,000 to reach her goal.
To donate, please visit: https://www.gofundme.com/f/paulas-ladder-to-life