A NEW survey from the MS Society/Opinium has revealed only one in five adults in Wales aware of the condition know multiple sclerosis (MS) is most likely to be diagnosed in people in their 30s and 40s.
With misunderstandings and misconceptions about the condition making life harder for people with MS, the charity spoke to 500 people in Wales to find out what awareness is like.
The survey also found:
- Over nine in ten people in Wales have heard of MS (92%)
- Of those who’ve heard of it, 85% know it’s a lifelong condition, 88% know it affects nerves in the brain and spine, and most are also aware it’s unpredictable (79%)
- But only a third know women are more likely to be diagnosed with MS than men (33%)
- And less than a third (29%) know that smoking, obesity and lack of sunlight can increase a person’s risk of developing MS
Most people usually get an MS diagnosis between 30-49 years old. Despite this, 82% of people in this age group from Wales who said they were aware of MS didn’t know an MS diagnosis at this age is more likely.
Over 6,000 people live with MS in Wales, with 300 diagnosed annually. The condition affects the brain and spinal cord and impacts how people move, think and feel. Symptoms are different for everyone and often invisible and include pain, mobility issues and fatigue.
A number of people in the public eye are living with MS in Wales and across the world, including MS Society Ambassador Daf Wyn, a presenter on the daily magazine show ‘Heno’ (S4C), who was diagnosed with relapsing remitting MS at the age of 30. Actors Selma Blair and Christina Applegate were both in their 40s when they found out they had MS.
MS is the most common neurological condition among young adults. Across the UK, an estimated 3,600 people between the ages of 30-49 are diagnosed with the condition each year.
Glesni Roberts is 46 and from Caernarfon: “My diagnosis came at a particularly challenging time, following my mother’s passing. Initially, I was misdiagnosed with a viral infection. I experienced progressive symptoms like weakness in my right arm, speech difficulties, and facial drooping. Doctors even initially suspected brain tumors.
“When I was finally diagnosed, I felt a mix of relief and anxiety. I worried about how this would progress and impact my life. The first meetings with support groups were crucial in helping me understand my condition. Family and friends responded with shock, unsure exactly what MS meant.
“It would be helpful if there was greater understanding about how MS can affect people at different stages of life.”
Helen is 35 and from North Wales: “My journey with MS started in my teens with fatigue, but it wasn’t until my pregnancy that things became more serious. I was hospitalised after falling at work, experiencing numbness and mobility issues. It took 18 months to get a final diagnosis.
“I’d never fully understood MS before my diagnosis. The biggest challenge was significantly reducing my weekly working hours to accommodate my health needs. Occasionally, I grieve for my old life, but then I have a reality check and feel grateful to be able to walk to the shop with no pain.
“It would help loads if people had greater understanding of how MS can affect young people, especially working mothers.”
Shelley Elgin is Country Director for Wales at MS Society Cymru: “The stories of Helen and Glesni powerfully illustrate the reality of MS for young people in Wales.
“They show how MS can impact people at different life stages – from a healthcare assistant in her early-30s to a company secretary in her mid-40s. We need to challenge the misconception that MS only affects older people. MS can be debilitating, exhausting and unpredictable and we know it often strikes at a time when people are making big life choices about careers, relationships and family.
“If there’s a better understanding of MS – that could make a huge difference, from taking the fear away from a diagnosis, to making conversations with family, friends and employers that little bit easier.”
If you are affected by MS and in need of support, there’s lots of information on the MS Society website and it provides support via an MS Helpline: 0808 800 8000.
