MS Awareness week is happening this week, in order to raise funds alongside awareness about the condition. People with Multiple Sclerosis often feel many people don’t know enough about Multiple Sclerosis (MS).
What is Multiple Sclerosis?
It’s is a lifelong condition, with a diagnosis most commonly made in people in their 20s and 30s, and it’s two to three times more likely to be diagnosed in women than men. There are about 100,000 people with the condition in the UK.
MS affects the brain and/or spinal cord. It’s an autoimmune condition, where the immune systems attacks a healthy part of the body for unclear reasons. It attacks a layer that protects the nerves, called the myelin sheath. When the sheath and nerves get damaged, they act in a disrupted way.
How it feels to live with MS
Emm Nicholson, 33 lives in Camberwell and has relapsing MS, which means she experiences periods of symptoms and relapse, follow by periods of disease remission.
“I was first diagnosed in November 2011. I had symptoms for four years – tingles up and down my back – but it took ages to get a diagnosis. Initially they thought it was an RSI or a trapped nerve,” she says. “One of the hardest things is it can be really isolating. Everyone knows how a headache feels when you describe it. Trying to describe to someone that your skin is cold and numb but also feels like it burning is really hard – they look at you like you’re crazy.
“There’s also a lot of judgement. I struggle with balance and someone tutted at me on the bus when I stumbled – they thought I was drunk,” Emm says. “And the emotional fall out – anxiety – is really horrible. If I could choose to have MS symptoms or my anxiety around it, I’d choose the symptoms. Not being able to plan or know how you’ll be in the future is hard.”
Olivia Hall, 25, lives in Derbyshire and was diagnosed in April 2016. “It’s hard not knowing when I need the toilet and it’s quite soul-destroying. Anxiety, nerve pain, bad balance, cognitive issues, not feeling my feet, fatigue and headaches are all just a handful of everyday symptoms.”
“It’s very easy for people to forget you have MS. Not every symptom shows but that doesn’t mean we aren’t suffering,” says Pippa Atkins. She’s 29 and was diagnosed 10 years ago.
What causes MS and can it be treated?
Genetic and environmental factors are both believed to play a part, but exactly what causes the immune system to act in this way is unclear. Too little vitamin D and obesity are said to possibly be linked to MS, while having a family member with MS raises your risk of developing it.
There is no cure, but there are treatment options. Emm has disease modifying therapy. “I’m about to try my third type. Initially, it was an injection, which then became available in pill form so I moved to that, but it’s stopped working. Luckily, there are many more options now than when I was first diagnosed,” she says.
What they want you to know
“I wish people would educate themselves on MS,” says Emm. “That, and try to be a bit more compassionate – don’t judge.”
“I wish more people knew how hard the illness is each and every day,” says Olivia. “Once you’re diagnosed, life will never be the same again.”
“Don’t treat us differently, remember we all have goals in life. Some may be hard to believe, but we have as good a chance as anyone else at achieving them,” says Pippa.
How can I help?
During MS Awareness Week (23-29 April), the MS Trust wants you to go Bold in Blue to help raise funds. Organise a ‘blue’ cake sale, get sponsored to dress in blue or dye your hair blue – it’s for a good cause.
“MS Awareness week is so important,” says Pippa. “I was so pleased to hear about MSTV (a new YouTube channel launched by the MS Trust) – I honestly believe this will make the world of difference to any young people diagnosed with MS and will show them that they are not alone.”
“Trials are my biggest hope for the future – this area is so promising and exciting,” says Olivia.
Raising funds for research is key. The MS Society is running a research fundraiser, Kiss Goodbye to MS, this May – give up your favourite guilty pleasure to raise money for the cause. Emm’s given up caffeine, and the money is desperately needed, she says, “for research into new drugs and into what actually causes MS.”
Sign up here.