Lina Nielsen: My journey with multiple sclerosis and my dreams as a British athlete


As a British athlete, Lina Nielsen has faced many hurdles while trying to compete and beat the world’s best. But sharing her diagnosis of multiple sclerosis and learning more about it while still competing at the highest level has been a unique journey that she has wanted to share.

Over 130,000 people live with MS in the UK, and Nielsen is on a journey to find out exactly what the condition is and how to live with it.

As part of a short series for Sky Sports News, the 27-year-old spoke to various experts, including researchers, psychologists and those with MS, to help debunk some of the myths surrounding this condition.

Athletics was Lina’s first love at 11 years old, but it was at 13 when she first started experiencing symptoms. Initially, the disease came in the form of weakness in her left arm and was misdiagnosed as a stroke. Nielsen sat down with her mother and twin sister Laviai to remember when she first started noticing symptoms.

Lina’s mother said: “I remember the first time you had that attack, you were sleeping, and it was eight o’clock, and I was downstairs, and I called Laviai to get ready to go to school. And [Laviai] told me, ‘Lina, she cannot get up from the bed’.

“And you told me you cannot move your arm, and you cannot move your hand. I was very worried, and I said, maybe you know, you’ve become paralysed or something because I didn’t know.”

But Nielsen’s mum could not be any prouder of Lina’s determination and resilience as she continues to follow her dreams.

Lina Nielsen with her mother and sister

Lina Nielsen with her mother and sister

Last year, the British 400-metre hurdler went public with the news that she has MS after almost a decade of keeping it private.

The symptoms of a flare-up struck on the eve of her heat at the 2022 World Athletics Championships in Oregon, leaving her unable to perform at her best. One of the only people to know about her diagnosis was her twin sister and best friend, Laviai.

“When I first told you about my diagnosis, do you remember when it was?” asks Lina.

Her sister replied: “Yeah, vaguely. It was in the back of a car. And I think the words you used were, ‘do you even know what I have?’ And I was like, ‘No, you didn’t tell me’. You were like, I have multiple sclerosis. And I’m like, ‘What’s that?’ And I think it was just a confusing time because I had heard it floating around, but I didn’t quite understand how a 17-year-old would have MS,” Laviai told Sky Sports News.

Lina asks if her sister remembers “supporting me through any of those relapses that I had … how you helped me get through some of those?”

Lina Nielsen with her twin sister Laviai

Lina Nielsen with her twin sister Laviai

Her twin sister Laviai did, adding: “I think initially, because I didn’t know what it was, I went on to Google to search up the disease, and it said that you might end up in a wheelchair, and I didn’t really know what to think of that. And then you told me that there are different types of MS.”

Lina remembers her relapse at the World Championships well. “So, let’s take it back to my most recent relapse in Oregon, the World Championships. You knew straight away that something was wrong, didn’t you?”

Laviai said: “Yeah, it was your first World Championships, and you’d worked so hard to get there. And I remember you woke up, I think it was two days before your heats, and I immediately sensed that something was wrong.

“Initially, I thought maybe it was nerves, but then when you said you couldn’t feel your torso, it brought back all those memories of being 17 and not really knowing what was happening. And that was really scary.”

But have times, medicine and research changed since Nielsen’s diagnosis? She travelled around the country to find out, starting with a visit to the University of Nottingham, which has a special department investigating the effects of MS.

Dr Nikos Evangelou, a researcher at the university, said: “Until recently, we’re saying this is an autoimmune condition. So, our immune system fights infections, bugs and viruses, and so on, but sometimes it turns against ourselves.”

Nielsen asked the specialist: “One of the things that people said to me was, how are you still doing what you’re doing? And I tried to explain there’s inflammation, and once that inflammation goes down, you can regain function of that nerve.”

Nielsen speaking with Dr Nikos Evangelou on current MS research

Nielsen speaking with Dr Nikos Evangelou on current MS research

Dr Evangelou, speaking to Nielsen, who had a sprained ankle, said: “So exactly like you have the swollen ankle. If you have the initial inflammation, there is a bit of swelling in the beginning. This swelling disrupts the function of all the nerves that go there. Exactly like your ankle.”

Nielsen also met Dr Blanca De Dios Perez from the University of Nottingham to talk about the psychology of multiple sclerosis, how the general public perceives it, and why we always think of the worst when it comes to the disease.

“There’s a lot of stigma surrounding MS. Would you say that sticking to work or exercise and movement, in my example, can become a good coping strategy for people who are newly diagnosed or have been living with MS for a while?” Nielsen asked.

Nielsen discusses the stigmas around MS

Nielsen discusses the stigmas around MS

Dr Perez replied: “Work is good for health. Exercise is also very good for health, and for people with MS, it helps you with mood, overall quality of life and fatigue. So, if you continue exercising, that can be your approach towards managing your symptoms.”

When Nielsen was first diagnosed with relapsing-remitting MS, she initially searched, ‘What is MS?’ on Google. She was worried when she saw images of people in wheelchairs.

She added: “You’d see these big words, ‘debilitating’, ‘chronic’, ‘incurable’, and things like that. So, for me, it was really just taking the time to understand my condition.”

The British athlete was keen to get advice from those who might also be in her place. She asked: “For people newly diagnosed with MS, how can they begin to turn away from the umbrella term you see on Google and other resources and maybe understand it within themselves, how to manage or cope with their condition?”

Dr Perez replied: “Simple answer. Don’t Google it. Never Google.

“It can be really scary to Google MS, and you may see unreliable information. You might read something that might put ideas in your head that is not quite there. If you are newly diagnosed, the MS Society or MS Trust have reliable resources that are quite useful for a person who has been newly diagnosed. Learn from yourself, from your experiences, and not from another person’s experiences because you might go through a completely different pathway.”

For Nielsen, diet has played a big role in her recovery from relapsing-remitting MS. She flew back home early after her relapse last year at the World Championships in Oregon.

While preparing a salmon dish, she said: “I knew I needed to have the right foods to help my body recover, so I would make dishes like this.”

Lina Nielsen emphasises the importance of diet

Lina Nielsen emphasises the importance of diet

Nielsen also spoke to executive director of research and external affairs Dr Sarah Rawlings from the MS Society to explore what kind of resources and support is in place for newly-diagnosed patients.

“How do you think the general public perceives MS? How do you think we can change that, and is representation important?” Nielsen wanted to know.

“Because MS affects everybody so differently, no two people’s symptoms are the same, and because so many of those symptoms are hidden, I think many people really don’t understand MS and what it actually means to live with MS daily. Which is why raising awareness is so important,” Dr Rawlings explained.

Nielsen asks: “For many people with MS, myself included, deciding a course of treatment to go on can be extremely overwhelming. And there’s so much information out there. What resources does the MS Society have to help you or support you in deciding on that big decision?”

Dr Rawlings admits it can be “hugely overwhelming”.

Nielsen speaks with Dr Sarah Rawlings from the MS Society

Nielsen speaks with Dr Sarah Rawlings from the MS Society

She adds: “There are over a dozen licenced treatments for relapsing MS. Some are starting to emerge for progressive forms of MS.

“But what treatment you might like to think about varies from person to person, depending on a whole host of different things. In the MS Society, we’ve developed a disease-modifying treatment tool called the DMT, which takes about 15 to 20 minutes. People can go onto our website and answer a whole range of different questions about them.

“And then what the tool will say is we suggest that you might want to look at these treatments and talk about them with your health care professional. But here’s what some of the options might be for you.”

Nielsen spoke to several people on her journey to discover more, including Mathew Embry. He was diagnosed with MS in 1995 and has spent his whole life learning how to manage MS through diet and exercise. Embry has not relapsed for 27 years.

Nielsen speaking with Matthew Embry on his MS journey

Nielsen speaking with Matthew Embry on his MS journey

He said: “I was actually kicking a basketball in the basement and suddenly couldn’t really feel the ball that well. It was a combination of numbness and hypersensitivity. Very hard to explain. And then that feeling went up from my foot all the way up into my chest within about 20 minutes.”

Reflecting on her own experience, Nielsen said: “One of the things I noticed was the perception of me was, well, she’s not in a wheelchair. Why doesn’t she go to the Paralympics? So, it was the flipside which I’m not saying is the bad side, but there’s a whole part that people are missing.

“And I think we’re not seeing enough of those success stories. And I think part of that is fear of sharing. It is a personal journey that people with MS go through, but we’re also not seeing enough of that side. I look back at how I was when I was 18, looking for the resources, hope, and just any information I could get. So, one of the things I want to ask people is, what advice would you give to someone newly diagnosed with MS?”

Embry said: “There’s access to information today that was impossible 10, 20 years ago. And then you’ve got to curate your resources properly. And that’s what we try to do with my website. And find the successful people and get a hold of them.”

For anyone with MS the best advice is to seek professional medical advice. For more information, please visit the MS Trust or MS Society. If you are affected by these issues or want to talk, please contact the Samaritans on the free helpline 116 123, or visit the website www.samaritans.org



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