“All I want is to go to sleep and know when I wake I’ll still be able to walk”

Birmingham 21 year old 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 21 year old from Birmingham is shedding light on the need for new treatments as part of a £100 million charity appeal.1

Zach Jewkes, who lives in Halesowen in Birmingham, was diagnosed with relapsing MS in 2018. The former American Football player’s day to day symptoms are fatigue, pain, and mobility problems, and he relies on a Zimmer frame to get around.

Zach said: “It started off as just a little bit of tingling in my toes. I thought I’d been sleeping funny on them. But as the weeks went on I was in and out of A&E and gradually deteriorating. It got to a point where I couldn’t go to the toilet and had to be catheterised which was really nasty. Within a few weeks I couldn’t walk without a Zimmer frame.

“When I got the MS diagnosis I was terrified – I didn’t know how bad it could get so it was like a constant paranoia. When you’re young you just want to be a healthy person getting along, but I was gradually having things taken from me. I’d been playing American Football since I was 13 but I had to stop because I wasn’t strong enough anymore. And my relationship with my girlfriend took a hit because you lose intimacy and can’t do certain stuff. We’ve worked around it and she very much acts as my carer now. She’s amazing.”

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 Zach is one of 30 under 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 nurse, an expectant mum, and a trainee vicar 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.

Zach continues: “At the moment my legs lock up all the time and I can struggle to move around, hence the Zimmer frame. I don’t let it hold me back but all I want is to go to sleep and know when I wake up the morning I’ll still be able to walk. There’s that constant fear I could deteriorate, and spiral into progressive MS and permanent disability. I try to avoid thinking about it but it’s the elephant in the room.”

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 MS Society 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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