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Nurse’s shock diagnosis leads to three peaks challenge

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Attempting to summit three of south Wales’s highest mountains on the same day would be tough for most people but when you have Multiple Sclerosis, it is a serious prospect indeed.

Nerys Jones, however, has set herself the challenge of doing just that after being diagnosed with the condition.

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The 24-year-old will aim to climb Sugar Loaf, Pen y Fan and the peak above Llyn y Fan Fach, all within 10 hours.

Nerys, who works as a nurse in Morriston Hospital, will be joined by colleagues from Ward J, along with family and friends.

Her ultimate aim is to raise awareness of the condition alongside £1,000 for the MS Trust.

Speaking about her diagnosis she said: “It 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.

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“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.”

Multiple sclerosis or MS is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms. It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.

Some of the most common first symptoms of MS are fatigue, problems with balance or co-ordination in the legs, unusual feelings in the skin such as pins and needles, pain or numbness, slowed thinking, and problems with eyesight.

Nerys’ message to anyone who may be worried is to seek advice.

“You should just trust your instinct,” she said.

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“You know when something isn’t right, you know your own body. If you think something isn’t right, have it checked.

“I felt as though I was having an electric shock every time I put my neck down, then it disappeared for a couple of years but then came back.

“It was suggested it was a trapped nerve but I knew it wasn’t normal and kept pushing. I went for a MRI scan and was diagnosed on April 26th of last year.”

Nerys is currently participating in a MS clinical trial.

She said: “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.

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“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.”

Showing remarkable fortitude, Nerys is keen to raise awareness of the condition.

She said: “They do class it as a terminal condition, it affects your life expectancy by about five years.

“It effects people differently depending upon which nerves it attacks in your spinal cord. It can affect you 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.”

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Rather than allowing herself to be phased by such a prognosis, Nerys devised the three peaks challenge.

She said: “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.

“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.”

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The good thing is she won’t be alone.

“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.

“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.”

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.

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“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 Nery’s fundraising please visit her JustGiving page here.

Lead image: Nerys larger right pic and her ward manager, Sam, large left pic, along with Ward J colleagues ahead of the challenge.

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Swansea student in triathlon challenge for Heart Research

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A student at University of Wales Trinity St David is taking on UWTSD Swansea Triathlon on 28-29th May to raise vital funds for the British Heart Foundation (BHF) and put a positive spin on what’s been a tough time for her family.

Sophie Taylor, originally from Cardiff, who is studying a BA in Product and Furniture Design at the university’s Swansea campus, decided to raise money for the BHF because her sister Hollie’s partner has a heart condition and is grateful for the medical research and treatment which has enabled him to live a happy life.

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Alex Martin, who now lives in Abergavenny and is originally from Hereford, found out he had congenital heart disease just before his 24th birthday during a medical examination when he was in the process of joining the army.

Alex was born with a bicuspid aortic valve, and the discovery meant he couldn’t sign up. But thanks to progress in science, surgeons were able to replace his heart valve, giving Alex a future with his partner, Hollie.

Alex says, “From a very young age I’ve always wanted to join the army, however, this was turned on its head at the age of 23. After undergoing an army medical check, it was discovered that I had heart valve disease and I had to have open heart surgery to replace the valve. Through the diagnosis and surgery my girlfriend Hollie has been my rock. We’ve been together since we were eighteen and our relationship has never been stronger.

“When Sophie approached me about doing a triathlon last year, I was super excited for her. Like everything, it was postponed, and here we are less than 2 weeks away from Sophie attempting her first multi-sport event. It was made even more special when she told me, that she wanted to do it for me! When I say, ‘me’, I mean on behalf of me for the BHF. I thought, ‘what a lovely idea,’ and was more than happy to help in any way possible. Be it training advice or letting her use my kit for the big day. I could not be prouder of her and cannot wait to see all the hard work pay off on race day.

“Without people like Sophie doing events like this and raising money for the BHF who knows where I would be. So, thank you Sophie – Now let’s go and smash race day!”

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Alex and Hollie

Sophie says she’s taking on the challenge to turn a potentially negative situation into a positive one, “Life so far for my family hasn’t been easy and my mental health has suffered. When we found out about Alex’s condition it was a big strain on my sister and I saw how much it affected her. Myself and Hollie are very close and have always been rather active, but this is one of the biggest things I have ever done in my life. I can’t say it’s been easy juggling my second year at university and training as I have had to balance my time well; but it’s the smile on my sister’s and Alex’s face that will make this all worth it as this is just the beginning of what I want to do for the British Heart Foundation.

“I think Alex is the main reason I am doing this as he’s always been inspiring for me when it comes to sport as he’s always encouraged me to explore in different activities, and since his operation he has been limited to the activities he can do. So this is me doing it for him and showing myself also what I am capable of.

“I just want to give something to those who are battling every day, because if we all did the same the world would be a different place.”

She adds, “Since it was established the BHF has helped halve the number of people dying from heart and circulatory diseases in the UK each year, but sadly every day hundreds of people still lose their lives to these conditions. It’s only thanks to support from people like us that BHF-funded researchers can help create new treatments. £24 could pay for two hours of research by an early career scientist, but every pound helps so I wanted to take on this challenge to do as much as I can for people living with heart conditions.”

Alex’s partner, Sophie’s sister Hollie says, “I could not be prouder of my sister for getting out there and doing something she has never done before. More than anything I would like her to be proud of herself and realise how far she has come. Like many students, Soph has been struggling with her mental health since starting her degree during the height of covid. It really took its toll on her. However, she has used this triathlon as a challenge to help her overcome her struggles.

“When Sophie mentioned she would like to do the Triathlon for the British Heart Foundation, Alex and I were choked by the gesture, as the charity has been of huge support to us and our families over the last few years.

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“In November 2019, Alex was sat in an army medical room unaware that he was waiting to be told that his life was not going to turn out how he planned it to be. The medical uncovered the signs of a congenital heart condition known as a bicuspid aortic valve which caused the dilation of his ascending aorta. Through many consultations and appointments, it was clear that Alex required urgent treatment.

“In October 2020, with a number of setbacks due to the coronavirus global pandemic, Alex finally underwent open heart surgery at the age of 24. Since, his surgery, Alex has made a speedy recovery, and although the dream of an army career has been halted, he is able to live his life as close to normal as possible and looks to join Sophie in her next Triathlon Event, whenever that maybe.

“Both our families have recognised that without the support, research and aid offered from the British Heart Foundation and the cardiac specialist, the outcome of Alex’s story would be very different.”

Jayne Lewis BHF Fundraising Manager said: “We are so grateful to Sophie for supporting the BHF’s research. For more than 60 years the public’s generosity has funded BHF research that has turned ideas that once seemed like ‘science fiction’ into treatments that save lives every day. But millions of people are still waiting for the next breakthrough.

“Today in Wales around 340,000 people are living with the daily burden of heart and circulatory diseases. We urgently need the public’s support to keep our lifesaving research going, and to discover the treatments and cures of the future. It is only with donations from the public that the BHF can keep its lifesaving research going, helping us turn science fiction into reality.”

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To support Sophie, go to: www.justgiving.com/fundraising/sophie-taylor91

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Ospreys star helps kick off mental health awareness week activities

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As Action for Children marks Mental Health Awareness Week (9-15 May), the charity recently celebrated its Bouncing Back Plus mental health partnership with Ospreys in the Community with a huge event at the Academy of Sport in Llandarcy.

Hundreds of primary school children joined the celebrations and were treated to rugby sessions, craft workshops, music therapy and mental health classes with Ospreys star, Lloyd Ashley.

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The charity teamed up with the rugby region’s community arm over the autumn and spring terms to deliver a combination of classroom-based Cognitive and Dialectical behavioural therapy (CBT and DBT) techniques and physical exercises such as touch rugby on the playground.

Bouncing Back Plus has become increasingly important as recent Action for Children research showed nearly a third of children across UK (32%) said that school does not provide enough emotional support for them with 28% of parents agreeing.

The children the charity polled in Wales were the least satisfied with support received in schools with 28% saying they received a great or good amount of practical support and only a quarter (25%) reporting getting the same level of emotional support.

Primary school kids from the Ospreys region enjoying craft sessions

Caryl Dyer manages the Bouncing Back Plus programme for Action for Children in the region and said: “The celebration was wonderful. We wanted to run an event to celebrate the success of the programme as we’ve worked with 15 primary schools and almost 800 children in 6 months. The programme is critical for the mental health and wellbeing of our primary school children especially in light of the Covid-blighted period they have been through.

“We wanted to invite everyone along and enjoy a bit of normality and the elements of mental wellbeing and physical exercise in lots of different workshops. It’s been a roaring success working with Ospreys in the Community, the partnership has gone from strength to strength and it’s a pleasure to be a part of it,” she added.

Holly, 11, from Coed Hirwaun Primary School enjoyed the celebration and said: “It’s been really good and a lot of fun. We did lots of activities and I really liked doing ‘capture the flag’ and making stress balls.”

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Tyler, also 11, from Pontlliw Primary School, added: “The day was fun, I enjoyed the rugby and the stress ball class. I enjoyed all of it, really.”

The children enjoyed a host of physical exercise activities as well as wellbeing sessions

At the end of each Bouncing Back Plus programme, each participant receives a Mental Health First Aid Kit, providing them with resources that support them to manage their mood and sustain improvements in their emotional wellbeing. The process also supports us to identify those young people who may need a higher-tier intervention.

Tom Sloane, Foundation Manager at Ospreys in the Community, said: ‘It’s really good to see that this programme is around supporting kids, building confidence, resilience and supporting mental health and wellbeing through physical and emotional sessions.

“The celebration ties off the last two years really nicely and it’s great to do that in partnership with Action for Children.

“It’s a really positive relationship we’ve got as official charity partners and we’re looking forward to the next year working together as this programme grows and hopefully, we can help even more children.’

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Kidney charity unveils new name and revamped branding

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After nine years of providing unrivalled support and care to the kidney community of Wales, the Paul Popham Fund, Renal Support Wales, is changing its name and revamping its branding.

The charity is now called: Popham Kidney Support.

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The re-brand signifies an important transition for the charity that includes a new name, logo and website. The charity opted to rebrand following a trustees meeting where the name was discussed. It was thought that the former name did not clearly explain what the charity offers. The new name, Popham Kidney Support, does exactly that, while also maintaining and recognising the historical origins of the organisation.

Popham Kidney Support was set up in 2012 and is managed by the friends and family of the late Paul Popham. The trustees felt that Popham must remain in the name, and this is also reflected in the logo, where Paul Popham’s handwriting is seen in its design. The brand colours have also stayed the same. The colour green implies new growth, vibrant health and also has connotations of rebirth and renewal, an apt description of what the rebrand represents.

The inclusion of a butterfly in the new logo design was chosen as a symbol of transformation, mirroring the sole objective for the charity which is to transform the lives of kidney patients. The butterfly wings are also made up of two kidney shapes, once again keeping a consistent theme that is relevant to what the organisation offers.

Popham Kidney Support’s rebrand journey began in September last year, and the trustees have been through various stages of feedback. This has included offering the service users and followers of the charity the opportunity to give their opinion on the new name and the logo design. Keeping an open dialogue between the charity and its service users, volunteers and stakeholders was an important aspect of the process for the trustees.

Additionally, the charity recently announced two new ambassadors: TV chef Matt Tebbutt and Welsh TV presenter Sian Lloyd, both of whom will aid the charity in reaching its fundraising goal. The goal for Popham Kidney Support is to raise £132,000 for the Children’s Kidney Centre, Cardiff and it has recently surpassed £30,000.

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Sian Lloyd, Popham Kidney Support ambassador, said: “The new name is an exciting new chapter for the charity, offering a new clear direction into its 10th year.”

Matt Tebbutt, Popham Kidney Support ambassador, said: “I wish Popham Kidney Support the best of luck with its rebrand. The new name and logo are now an appropriate symbol of what they do. I am pleased to help such a fantastic charity that provides vital support to those with kidney disease in Wales.”

The new name and logo were unveiled at the charity’s Supporters Celebration on April 29 at the Mercure Hotel, Swansea. In attendance were the trustees and employees of Popham Kidney Support, its service users, volunteers and stakeholders, all of whom have helped the charity support everyone affected by kidney disease in Wales, and a guest appearance from former Swansea City footballer, Lee Trundle.

Joanne Popham, CEO of Popham Kidney Support, said: “We are extremely pleased with the result of the rebrand. It was important to the trustees and myself to recognise the history of the charity, and we have done that by keeping Popham in the name and my dad, Paul Popham’s handwriting within the logo, keeping his legacy alive.

We believe the new name and logo clearly signifies what we do, it says, no one is alone in their journey, the charity is here to support them. Though we have seen a rebirth of the charity, our aims remain the same: to ensure our community of people with kidney disease can experience life to the fullest!”

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