Words by Smiley Team
Finding out you have Multiple Sclerosis (MS) is a life-changing moment.
And for most people who receive that diagnosis, it happens when they are in their 20s or 30s - a time when they are often thinking about advancing their careers or having a family.
MS is the most commonly diagnosed neurological condition in people in their 20s and 30s in the UK, but despite this many support services and a lot of media coverage of the condition concerns people who are much older and whose MS is advanced.
For George Pepper (pictured), who was diagnosed with MS at the age of 22, it was frustrating not to be able to meet or communicate with other people in the same situation as him, even online. So George, from Leeds, decided to set up a website in 2009 where people with MS - MSers - could meet and share their experiences.
That website has become the charity shift.ms, which provides an online community as well as support to more than 37,000 members worldwide.
George said: “It can be very lonely to find out you have MS and I knew that most people are diagnosed when they’re young, yet it wasn’t what I was seeing at hospital appointments.
“I feel there are a different set of needs for people who are newly diagnosed and those further down the line or with a more aggressive form of the disease. Understandably I think young people can be hesitant to reach out for support as they fear seeing people who are more advanced.
"At shift.ms our motto is that MS doesn't mean giving up on your ambitions, it just means rethinking how to achieve them.”
It’s a message that has been essential to Ellen Tutton. Ellen, from Essex, was diagnosed with MS in 2015 when she was 27. She now volunteers for shift.ms as a mentor for their buddy scheme, where newly diagnosed people are paired up with MSers who are further along their journey.
Ellen said: "Being diagnosed with MS has brought joy to my life and enriched it in ways I wouldn’t have thought possible, like travelling around Europe to talk about my experiences as an advocate for Shift.ms.
“So when the opportunity came up to be a buddy it was something I knew I wanted to do. I know how lonely it can feel to live with MS and how that diagnosis can change your life in an instant.
“Being able to share my own experiences, and watch someone else grow in confidence because they can see that living a really full and fun life is possible, has been uplifting for me and very positive.”