Video report by ITV Wales reporter Mike Griffiths
A "world first" trial of a new treatment for people living with multiple sclerosis (MS) in Wales has started at the University Hospital of Wales in Cardiff.
Called "Octopus" it is funded by the MS Society and it's hoped it will speed up the research process by more than 30 years.
There are more than 5,000 people in Wales living with MS, and many, who have the progressive forms, have little to stop their condition from getting worse.
Disability progression is caused by degeneration of nerves in the brain – something that happens to all of us as we age.
In MS and other neurodegenerative conditions, like Alzheimer’s and Parkinson’s, this happens more quickly. Despite this, there are no treatments that target this.
Lisa Haines, 55, from Cardiff was diagnosed with primary progressive MS in 2006, three months after having her second child.
In 2009 she was forced to medically retire due to severe fatigue. The former banking customer service advisor is the first participant to join the Octopus trial in Cardiff.
She said: “In 2017 I went to Mexico and paid privately for Hematopoietic stem cell transplantation (HSCT) as there were no eligible treatments for me in the UK.
"It was brilliant, and after the treatment, a lot of my symptoms went, like my fatigue, brain fog and heart palpitations.
"My bladder was also a lot better for a while. But around 2019 I started having pain in my back which affected my legs. I was trying to exercise and do as much as I could but it stopped me in my tracks. “I felt brilliant being given a place on the trial. I couldn’t believe it. There is nothing else for people with primary progressive MS, so I’ve got nothing to lose.
"And if it doesn’t help me then it could only forward research for someone in the future. MS is such a horrible condition but I live in hope.” Dr Emma Tallantyre has been working in MS trials for 15 years and said: “Progressive MS remains an unmet need, both in Wales and around the world. Octopus is a landmark trial, one of the first of its kind in MS.
"Although repurposed treatments have been used before, this is a really neat way of using them to bring more efficiencies – that’s what we need. “This is such an exciting opportunity for people, like Lisa, who currently have no or limited treatment options to have something that could be disease modifying.
"And it’s great to feel that despite being a relatively small country, the UK might be responsible for moving things forward for people with MS on a global scale.” Shelley Elgin, Country Director at the MS Society Cymru, said: “More than 5,600 people live with MS in Wales – over 130,000 throughout the UK – and there are thousands with progressive forms who have nothing to stop their MS getting worse.
"We won’t stop until we have treatments that transform the lives of everyone with MS.”
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