One in five with multiple sclerosis now under 30 – Bucks blogger speaks out
“I pray every day this is the worst I’m going to feel”
25 year old Bucks blogger reveals impact of multiple sclerosis in charity appeal
As evidence reveals one in five people diagnosed with multiple sclerosis (MS) in the UK is now under the age of 301, a 25 year old Buckinghamshire blogger living with MS is shedding light on the need for new treatments as part of a £100 million charity appeal.1
Charleigh Victory, from Flackwell Heath in Buckinghamshire, was diagnosed with highly active relapsing MS in 2017, when she was just 22. She lives with symptoms including extreme fatigue and pain, and her worst relapse left her blind in one eye.
Charleigh says: “When they first said I had MS I was confused. I thought it was usually only old people that get it, and didn’t understand how I could have an incurable illness at 22. I was angry but as the days went on I felt relief, because at least the pain wasn’t all in my head.
“Some people don’t understand MS, or will forget I’m poorly because I look able, and I’ve had a few unhelpful comments online about that. Stuff like oh you’re too beautiful to have MS. I think they thought it was a compliment but I definitely didn’t take it that way. I have said to people you know, what do you think MS looks like? Because MS looks like me!
“Today I’m happy, but sometimes I do slip into a state of depression. When I was first diagnosed it was really hard, and because I relapsed so quickly that was very overwhelming. I had five months of poor mental health, not being able to move, and feeling in a lot of pain. I still have highs and lows, and get very sad if I’m particularly fatigued and can’t do anything, but as I’ve started to understand the disease more I’ve started to feel more like my normal self.”
According to the MS Society, MS is the most common progressive neurological condition in young people today. There are 130,000 people living with MS in the UK and, in the last year alone, more than 1,250 people under 30 have been diagnosed.1 Charleigh is one of 30 under 30s appearing in a new story and photo series from the MS Society and award winning photographer Spencer Murphy, as part of the charity’s Stop MS Appeal. Subjects range from age 16-30, and include a trainee vicar, an expectant mum, and a drummer in a metal band amongst others.
MS is highly unpredictable and, when diagnosed, no one knows how their condition will develop, or how disabled they may become. Approximately 85% of people with MS are diagnosed with the relapsing form, where symptoms come in sudden attacks then fade. Two in three of them will go on to develop secondary progressive MS, where there is no remission and you become increasingly disabled. 10-15% of people have primary progressive MS, where symptoms gradually get worse from the outset.
Charleigh continues: “The day I was diagnosed my world got flipped upside down, but MS has also bought me so many opportunities. I’ve built a community online that I wouldn’t have met if I hadn’t become ill. So in a strange kind of way I do thank MS for coming into my life because it’s completely changed it… sometimes for the worst, but the majority of times for the better!
“I’ve never once thought oh I can’t do that because I’ve got MS. But the future can be scary. I don’t want to be wheelchair bound because I’ve already experienced not being able to walk – I pray every day that this is the worst I’m ever going to feel. If we can create a drug for MS that slows down or stops progression that’s not just going to benefit older generations, that’s going to benefit me and everyone else. And we need to make that happen!”
Tens of thousands of people with progressive forms of MS still have no treatment to help them as their condition advances. But the Stop MS Appeal needs to raise £100 million to find new treatments, so no one needs to worry about their MS getting worse. By 2025, the charity hopes to be in the final stages of testing a range of treatments for everyone with MS.
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, when they’re working on their career, or perhaps thinking about starting a family. The condition is unpredictable and different for everyone, and that can make it hard to plan for the future.
“There are now over a dozen licensed treatments for people with the relapsing form of MS, and some emerging for early active progressive MS – but there is nothing to stop you becoming more disabled as your condition advances. Thankfully, we have never been closer to stopping MS, and with the discoveries being made right now, we believe treatments that slow or stop disability progression are a very real prospect.”
Thanks to our amazing supporters, we’ve already secured over £54 million for MS research. With your help, we can reach our target and stop MS. For more information visit www.mssociety.org.uk/STOP-MS.
Text FUTURE8 to 70800 to donate £5 and support the Stop MS Appeal.
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