We launched a new press campaign this week as part of our Stop MS Appeal. The aim of the campaign is to extend the reach of Stop MS and challenge the way people think about the condition. We want more people to realise that MS doesn’t just affect older people.
We recently carried out a study with Public Health England. It shows one in five people with MS in the UK is now under the age of 30. In the last year alone, we estimate over 1,250 people under 30 have been diagnosed.
It is the most common progressive neurological condition in young adults today.
We teamed up with 30 people under the age of 30 living with MS in the UK to share their experiences. We did this through case studies and a series of photos of them. Photos were taken by award-winning portrait photographer Spencer Murphy.
Participants range from age 16-30. They include a trainee vicar, an expectant mum, and a former American football player amongst others.
The voices of our campaign
Sarah-Jayne Roberts is 22 years old and lives in Sheffield. She was diagnosed with relapsing MS when she was just 20 years old. Her most severe relapse left her unable to walk.
Sarah-Jayne, a trainee nurse currently working on a Covid ward, says: “The hardest thing for me has been the mental health side of things. I had never been an anxious person before my MS but I became quite depressed. I didn’t want to do anything and thinking about the future became a real problem. I was like if this is what my life is going to be like – constantly worrying what tomorrow will bring – what’s the point? I didn’t want to be here anymore. I didn’t want to carry on.”
“Looking back now, I have recovered to a certain extent and I’m glad I kept going... With all the advances being made in research I’m more confident it might be OK. And I could have a normal, active life where everything is possible for me.”
Ayad Marhoon, 23, is from Leeds and lives in London. He studies Psychology at UCL. He was diagnosed with MS in 2019 but doctors are not sure what type of MS he has.
Ayad says: “Although I was diagnosed with relapsing MS there’s still an uncertainty about that because my condition seems to be progressing. I didn’t need a walking stick back then but now I do. I also get a lot of brain fog, which can be tough when studying. We had a phone call recently about exploring new medications, to see if any of them might work better. But I don’t know if they will.
“I’m still trying to get a better idea of how my future is going to look. I hope to work as a clinical psychologist one day. But with the rate I’m changing I don’t know what things will be like in five years’ time. If I didn’t have to worry about it getting worse that would be a massive weight off my shoulders.”
Media coverage
Sarah-Jayne, Ayad, and the 28 other young people involved helped us secure some amazing media coverage. And raise valuable awareness of our Stop MS Appeal in the process. Highlights included articles in the Sun, Daily Express and Mail Online.
We’ve had prime time TV news coverage on ITV1 London, ITV1 Meridian, BBC1 South Today, and BBC1 Look East. We’ve taken part in live radio interviews on over 10 BBC radio stations. And we’ve also secured more than 30 items in large regional titles like the Yorkshire Evening Post, and Express and Star.
Further coverage is expected across the next week. This includes TV coverage with BBC1 East Midlands Today, BBC1 North West Tonight, ITV1 News West Country, and ITV1 Central, the Huffington Post’s ‘Chronic’ podcast. We’re also expecting print coverage in Chat magazine and the Manchester Evening News.
Why is this appeal so important?
Our Stop MS Appeal has been very successful so far and we’re now over halfway towards our £100 million target. We could not have done this without your help and support. Thank you!
Now we must do more to reach our goal, and find treatments for everyone living with MS. By 2025, we hope to be in the final stages of testing a range of treatments for everyone with the condition. We don’t want anyone to have to worry about their MS getting worse.
Dr Emma Gray, Assistant Director of Research at the MS Society, said: “Today, most people will first experience MS symptoms in their 20s and 30s. This may be when they’re working on their career, or perhaps thinking about starting a family. The condition is unpredictable and different for everyone. That can make it hard to plan for the future... Thankfully, we have never been closer to stopping MS. With the discoveries being made right now, we believe treatments that slow or stop disability progression are a very real prospect.”
For more information on the Stop MS appeal and how you can get involved, please visit the MS Society website by clicking this link.
