'It felt like I was going down a big black hole': Shrewsbury MS sufferer fronting appeal to fight progressive illness

As evidence reveals that one in five people diagnosed with multiple sclerosis (MS) in the UK is now under the age of 30, a 26-year-old living with MS in Shropshire is contributing to a £100 million charity appeal.

Laura Goodall lives in Shrewsbury with her parents. The para-showjumper – who won a gold and silver medal at Pferd International Munich last year – was diagnosed with relapsing MS three years ago. She lives with symptoms like fatigue, pain, memory loss, and mobility problems.

Laura said: “I was about 20 when the symptoms started. I’d randomly fall over or drop things at work, and started scalding myself in the bath because I couldn’t feel temperature. I had constant pains and would do really clumsy, stupid things all the time.

"I’d been riding since I was six years old and competed all over the country, but had to give up because my symptoms were making it too dangerous. My vision would blur so badly I couldn’t see, my muscles would go like jelly and I’d fall off the horse.

“I had so many tests for random things like diseases from Africa – it was only when I went to have my thyroid tested that a neurological issue was even mentioned.

"But the doctors told me I was wasting their time, and made out like I was exaggerating things. I kept badgering them and eventually had an MRI scan, where they saw it was MS – but by then the stress had made everything worse.

“I was in a mess and got really depressed. Horses were my life and I went from winning championships to not having anything. It felt like I lost everything overnight.

"My mental health was in a very bad way and the more I stressed about it the worse my symptoms became. I knew there was no cure, and it felt like I was going down a big black hole. I didn’t want to be here anymore and thought about ending my life, because I didn’t want to stick around for something that was only going to get worse.”

Unpredictable

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.

Laura is one of 30 under-30s sharing their stories as part of the MS Society’s Stop MS Appeal. Subjects range from age 16 to 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 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 patients become increasingly disabled. 10-15 per cent of people have primary progressive MS, where symptoms gradually get worse from the outset.

Laura said: “After some time I just decided I need to sort my head out and focus on getting some of my old life back – I wasn’t going to let MS beat me.

"And to be honest there have been some good things come out of my MS.

"I would never have been able to represent Great Britain as an able-bodied person. And I’m really fortunate that I have a treatment that’s working for me. Having the hope of there being something that can help makes a massive difference.

“I do still worry about how my MS will progress. The thought of what will happen and if I’d be able to cope is scary. But I have no idea what life will bring – all I know is however bad things were for me before, I’ve become brave enough to accept it and even embrace it. MS is not great, but you have to learn to live with the cards you get dealt.”

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 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.”

Learn more about the appeal at mssociety.org.uk/get-involved/fundraise/stop-ms.