There is never a good time to be diagnosed with MS. Coming to terms with the news that you’ve got a disease that’s going to be with you for the rest of your life is a huge challenge for everyone. But imagine you’re having to deal with it at 14. When you’re going through huge changes, making big plans for the future and going through all the stresses of school and exams. That’s what happened to Amy, who tells us about her experience here. More and more young people like Amy are being affected by MS. Because we’re getting better at diagnosing MS earlier, there are more teenagers, and children even younger, having to adjust to diagnosis, treatment, and planning for a future with MS.
There are also increasing numbers of young people affected by MS because a family member has been diagnosed. How does a young child understand that their mum or dad can’t play football with them because of MS fatigue, or can’t pick them up and hug them because of muscle spasticity or ataxia?
The MS Trust pioneered publishing accessible information about MS for young people, with publications like My Dad's got MS, The Young Person’s Guide to MS and The Kids Guide to MS. These were some of the most well received publications the MS Trust has ever produced. Parents and children alike thanked us for helping make some difficult conversations a little easier and throwing some light on what can sometimes be a very confusing disease.
But times change, and people now get their information in many different ways, so to ensure young people can access the information they need, when they need it, we're creating a new dedicated YouTube channel for young people called MSTV which we’re going to launch in MS Awareness Week. We want to create fun, informative, engaging videos that help young people understand more about MS and learn how they can manage the disease themselves, or help friends or relatives. But we need YOUR help.
There are lots of ways you can get involved:
Share your experience and help us raise awareness. You can fill out our online survey here.
If you’re a young person yourself, you may want to help us by appearing in or contributing to our videos. More details on how you can get involved here.
Support our work by fundraising or making a donation. Find out more here.