One in five people with multiple sclerosis aged under 30 years old

Charity MS Society estimates that over 130,000 people in the UK has multiple sclerosis, and in the last year alone more than 1,250 people under 30 have been diagnosed.

Tuesday, 23rd March 2021, 4:30 pm
Updated Wednesday, 24th March 2021, 8:43 am

Multiple sclerosis (or MS) is the most common progressive neurological condition that can affect the brain and spinal cord.

The symptoms vary depending on which part of the nervous system has been affected, and the job of the damaged nerve.

Symptoms could be problems with vision, balance, memory and thinking and emotions.

Panida

Panida Staplehurst lives in between Ditchling and Plumpton, where she runs a catering company with her mum.

She was diagnosed with relapsing MS during lockdown in 2020

Panida said: “To start with I was in absolute denial and just carried like everything was fine.

“But I started to feel the effects pretty quickly. The left side of my face dropped and I wasn’t able to smile or pull any facial expressions.

Laura

“My job involves a lot of customer service – I do all the deliveries for our company – and I’m generally a very smiley, happy person, so that took its toll on my confidence and really affected me mentally. I felt completely drained and didn’t want to work. I didn’t want to see anyone or do anything.”

Panida’s worst relapse left her unable to walk, this made her realise how severe it could be and that it could get worse.

She said: “My partner isn’t one to show his emotions, but I think he was quite scared, thinking am I going to end up being her carer. We’ve been together for nine years and we’re very strong, but those kinds of questions can niggle at you.

“We don’t know what’s going to happen – I could carry on for 20 years and just have a few relapses but be otherwise fine. Or something much worse. MS is very different for every single person so we just don’t know.”

Dr Emma Gray

MS is highly unpredictable and, when diagnosed, no one knows how their condition will develop, or how disabled they may become.

The MS Society states that approximately 85 per cent 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 per cent of people have primary progressive MS, where symptoms gradually get worse from the outset.

Panida continued: “When I was experiencing the main relapses it was during lockdown, so our business was shut and I had time to rest. But it made me worry a lot, and I kept thinking what if this happens again. All these anxieties just spiralled, because it brought up so many other questions of how I’m going to work in the future, and how can I earn a living.

“And because it’s me and my mum’s business, I’m then scared about what if she can’t work and I can’t either.”

In five years Panida would love to have her own cafe but MS has meant she has had to reevaluate her ambitions.

She added: “On Facebook and forums you read stories of people who have been diagnosed and are using a wheelchair within five months, and it’s scary to think that could be me. But we can’t predict what will happen, and that’s why research is so important to everyone.

Laura Chegwidden, 29, was diagnosed with MS during the pandemic, in September. Currently studying a PhD in cancer genomics, the research student lives with symptoms including chronic 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 said: “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.”

Laura’s parents have taken on a large caring role, and she hasn’t left the house alone for 18 months.

She said: “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.”

Laura continued: “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.”

Laura and Panida are featured in 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

Each year nearly 7,000 people are newly diagnosed. This means around one in every 500 people in the UK lives with MS, and each week over 130 people are diagnosed 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 on the condition and the charity, visit mssociety.org.uk