It started with the feel of an electric shock shooting through her every time she tilted down her neck. That then went away for a couple of years, but Nerys Jones knew something wasn't quite right.
And when it returned during lockdown, the Morriston Hospital nurse decided to get it checked out.
“It was suggested it was a trapped nerve but I knew it wasn’t normal and kept pushing," she said. "I went for a MRI scan and was diagnosed with Multiple Sclerosis in April last year.” You can get more Swansea news and other story updates by subscribing to our newsletters here.
Multiple Sclerosis disrupts the flow of information between the brain and body, and can cause problems with vision, limb movement, sensation and balance.
Nerys, aged 24, said: “They do class it as a terminal condition, it affects your life expectancy by about five years. It affects people differently depending upon which nerves it attacks in your spinal cord. It can affect your mobility or way of thinking – it can cause confusion in some people, it can affect your eyesight, quite a few things, everyone is different. It then gets progressively worse as you get older and it continues to attack your spine. You can read more stories about Swansea here.
"My diagnosis was during lockdown but I had pretty good support, especially as I was still working, everyone on the ward has been brilliant. I also have good support from my family. I’m very lucky. I’m trying to be positive and look on the bright side of things. I was very young being diagnosed, which is a good thing, and I’ve got a positive attitude about it.”
Nerys, who works on the hospital's Ward J, is currently participating in an MS clinical trial.
“I decided to participate in the MS evolution trial which compares an upcoming drug to a currently licensed drug to help slow down the progression of the condition," she said. "It is run by the neurologists and the clinical research centre in Morriston Hospital, who have been brilliant in supporting me through this new journey.”
Despite the diagnosis, Nerys's determination to raise awareness of the condition has seen her set her sights on conquering three of south Wales' highest mountains on the same day, to raise money for charity, the MS Trust. Joined by family, friends, and colleagues from Ward J, the team will aim to climb Sugar Loaf, Pen y Fan and the peak above Llyn y Fan Fach, all within 10 hours. Read here about a family's double cancer diagnosis with sisters both affected eight years apart.
“I wanted to do something a little bit different, that everyone would enjoy, and a walk is something that more people can be involved in," she said. “At the moment there’s around 40 friends, family and colleagues signed up for the walk.
“I’ve tried to be as active as I can but it’s definitely going to be a challenge for everyone taking part. The main thing is to raise as much awareness as possible. It’s a big challenge. We measured the walk and it’s 11 and a half miles.
“We’re going to do it all in one day and I think it’s going to take us two and a half hours to climb each mountain, staring at 7.30am with Sugar Loaf in Abergavenny. Hopefully, if all goes to plan, we will finish around 5pm. I’d quite like to raise £1,000, I don’t want to be over optimistic with setting the target, but the more the better, and it’s such a good charity.”
She offered advice to anyone concerned they might be experiencing MS symptoms: “You should just trust your instinct. You know when something isn’t right, you know your own body. If you think something isn’t right, have it checked".
Samantha Evans, Ward J manager, said: “We are a large ward and our staff are very close. When one of us is in a time of need then we will all work together to support that person. When Nerys was diagnosed it was difficult for her as we were in lockdown so hard to see friends and family, so her work family were additional support, in order to help her come to terms with her diagnosis.
“When she mentioned that she wanted to raise awareness and money for the MS Trust, we didn’t hesitate and got behind her to help organise the mini peaks challenge. We will continue to support her whenever she needs it, as she is a well valued member of our team.”
To donate to Nerys’s fundraising visit her JustGiving page here.
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