Tuesday, June 25, 2024
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What it’s like to be diagnosed with MS

As evidence reveals one in five people diagnosed with multiple sclerosis (MS) in the UK is now under the age of 30, Laura Chegwidden, a 29-year-old living with MS is shedding light on the need for new treatments.

Research student Laura Chegwidden lives in Bexhill-on-Sea and was diagnosed with MS (multiple sclerosis) in September last year. Currently studying a PhD in cancer genomics, the research student lives with symptoms including fatigue, memory issues, bladder and bowel problems, and difficulty swallowing. She relies on a wheelchair when leaving the house due to issues regulating her heart rate and blood pressure, caused by her MS.

Laura says: “I’ve had health issues since I was 17 but nobody had ever connected the dots until now. So many doctors made me feel like my problems weren’t real and I was just a bit of a weird case – after ten years, having a diagnosis of MS helped because there was finally a reason for it all. But of course, you’ve got the other side, which is knowing this is something that cannot be cured yet, and that has been a lot to deal with.

“My parents have had to take on quite a large caring role, which isn’t ideal when you’re 29. You want to be independent, but I haven’t left the house alone for a year and a half. It’s a slow process, working your way through to acceptance, and learning to live your life as much as possible because you can’t do anything about it. Treatment can help with relapses but there’s no fix for it, it won’t ever stop.”

An unpredictable condition

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.

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 the condition 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.

Research offers hope

Laura says: “My hope is to return to the field of clinical research after my PhD, but you don’t know how much MS is going to hold you back. At the moment out and about I’m using a wheelchair the whole time, but I fear being wheelchair-bound long term. When I was living alone I had carers come in four times a day, and my whole day would just revolve around waiting for them to come. Being so young, that is not a life I want. I am optimistic that with the right treatment my situation will improve.

“Research offers hope and that helps people like me remain positive about the future. Currently, there are some drugs but there’s no guarantee they’ll work, or how long for. Before my PhD, I was a clinical trial coordinator so I know how vital research is to aid our understanding of diseases and treatments. Research is the biggest thing keeping us going.”

Stop MS appeal

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 condition 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.”

For more information about the MS Society and its campaign to raise £100,000 for research, visit: www.mssociety.org.uk/STOP-MS.


Bex Bastable
Bex Bastablehttp://bexbastable.co.uk
Bex is a journalist and the co-founder of The Women's Work Collective.


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