We can become history makers and stop MS
Evie was diagnosed with MS at the age of 16. She’s supporting our #MSHistoryMaker campaign, and tells us what making history means to her.
My journey with MS
I was diagnosed following loss of feeling and strength in one side of my body at the age of sixteen. I was put on one of the few disease modifying therapies (DMTs) available back in 2009 and carried on with my life as much as I could: school, university, starting work.
In more recent years I’ve noticed the beginnings of secondary progressive MS. I can no longer walk far and what I can walk is much slower. I’ve had an increase in severity of almost every one of my symptoms over the last 15 years, and I’m no longer able to work.
Getting involved with the MS Society
It kind of happened in stages. It was about 10 years after I was diagnosed, when MS started impacting me a bit more. I thought: OK, I want to meet other people now and be a bit more part of something I’d never been part of before.
It took a while to get to that point. I didn’t want anything to do with MS. I was very much head in the sand, I don’t want to speak to anyone else that has it, I don’t want to know anything about it. But when I moved to Glasgow I wanted to meet people in a new city. So I thought well, I’ll go through the MS Society and I’ll start doing some fundraising. I think I did a bucket collection!
Finding common ground with others
It’s so hard to find and know people who have MS. Even reading a blog there’s a connection to someone else who understands it, even if you’re not talking to someone face to face.
It’s like there’s someone else out there who understands and experiences the same stuff.
I started sharing my own story for two main reasons
Firstly, to show young people being diagnosed with MS that their life will still be full and brilliant. And that even if MS does mean physical disability at some point it’s far from life being ‘over’.
But I also want to be honest about the realities of MS, and the debilitating impact it can have – particularly the longer you have it. I’m not ready for what progression is starting to do to my body. I think there’s so much still to be done to maintain and improve quality of life for those of us living with it.
Over time, I’ve got more interested in MS research
I think because my own MS is progressing, I have a more vested interest in developments in the progressive side. But also just living long with MS and wanting to know more about it and what’s going on.
There’s a lot of breakthroughs happening, and more understanding of the mechanisms of MS than ever before. It does feel like quite an exciting time.
Getting involved with the history makers campaign
When I was asked to take part in promoting the Christmas Stop MS Appeal campaign, I didn't need much time to think about it! I want to use my own experience and do what I can to help make a difference for the people being diagnosed with MS now, and in the future.
I hope sharing my experiences might inspire and empower people to get involved with the work of the MS Society, whether that’s through donating or sharing their own story, too.
We can keep up the momentum that’s fuelling advances in research and treatment of MS. We can become history makers!
Taking part meant doing a photoshoot…
I was asked to join a photoshoot in Glasgow. I’m always nervous before doing anything outside my ‘normal’ routine because my MS can be so unpredictable. I’m usually silently willing my fatigue to stay manageable and to actually be able to focus on what I’m supposed to be doing!
It’s always easier doing something with people who are involved in the MS Society, because I can relax in the knowledge that there’ll be more understanding and awareness there.
The shoot itself felt empowering and exciting. I left feeling like I’d been part of something really worthwhile.
MS research in action
Last year, I was part of another film shoot. I visited Professor Anna Williams in the lab in Edinburgh and we made a film about their research. It gave me such confidence that we will make history when it comes to MS.
And that’s all thanks to researchers and people in labs who’ve decided to do this with their life. It’s such a weird feeling. You just want to say ‘thank you’ to everyone. ‘Thank you – please don’t stop!’
Seeing MS research for myself made me feel quite emotional, seeing all those people and knowing they’re making a tangible difference to people’s lives.
With our help they’ll make history too, by stopping MS.
Research will stop MS. Be part of history by donating today.
You may also be interested in
