Three times more women than men are diagnosed with MS.
Almost everyone will have heard of MS, or Multiple Sclerosis. Yet the majority of us don’t fully understand what the condition is or how it affects people in their everyday lives. There might be a misconception about the age, ability or condition associated with a person with MS.
In February of this year actress Selma Blair revealed that she had been diagnosed with the condition. The Legally Blonde star has since been speaking openly about it, sharing videos of different ways that it affects her and helping to educate her social media followers and fans about life with MS.
And yet, her condition is not necessarily the same as the next person you might meet with MS. This is something charity MS Ireland wants to stress.
“Sometimes, people believe that MS is the same for every person who lives with it. In reality, no two people living with MS experience MS in exactly the same way. People living with MS can experience a wide range of symptoms at varying levels of severity,” a spokesperson for the society said.
So what is MS?
“Multiple Sclerosis – meaning ‘many scars’- the most common debilitating neurological condition affecting young adults in Ireland. It affects the motor, sensory and cognitive functioning of the body and is usually diagnosed between 20 and 40 years of age. The impact of MS on individuals, their families and the community can undermine the resilience that is needed for individuals to remain purposeful and in control of their lives. Three times more women than men are diagnosed with MS. There is no cause or cure,” An MS Ireland spokesperson revealed.
There is a wide range of symptoms which are associated with MS. An individual can experience any number or combination of symptoms at varying intensity levels and for different periods of time. Some common issues include fatigue, with 92% of people living with MS experiencing it. Others will experience Optic Neuritis – blurred vision or whole or partial vision loss.
Things like weakness of limbs, balance problems and sensory issues can be a factor. Cognition meaning memory, reason, problem solving or concentration can also be affected as can spasticity, so things like muscle spasms, stiffness and tremors can be experienced.
There can be bladder and bowel problems, sexual issues and speech and swallowing difficulties.
With such a vast array of symptoms and challenges, it’s easy to see why the condition can’t be defined by one statement.
Katie, was just twenty one when she began experiencing symptoms which would later be diagnosed as MS.
“I woke up one morning to one of my legs being numb with a pins and needles type feeling and I was dragging my leg.
“After a few days, it went away but returned a few days later in the other leg. It then spread to both legs, one arm, stomach and back area. After a few weeks everything was back to normal. Then months later it happened again.”
“In that first year doctors first thought it was a trapped nerve in my back or something like that, then I was passed onto so many different doctors testings for different things. I had countless MRIs, X rays and blood test done and I didn’t know what half them were for!” she admits.
After going doctors appointments and tests for months, Katie finally got a name for her condition.
“It was just over a year after my first attack that I was officially diagnosed with relapsing-remitting MS at the age of 22.”
It’s been three years since Katie was diagnosed, and she explains that it has a huge impact on all aspects of her life.
“It would be impossible to say that MS doesn’t impact my life. MS is so unpredictable that I don’t know when I will have a bad day,”
“My social life and plans can vary with my injection days as the days after I do my injections I can be quite unwell and might need to cancel plans that have made. Or some days I could be having an ‘MS symptom day’ where my fatigue is very bad or I am in a lot of pain,” she said, adding that support from those around her can help.
“I am very lucky that I have an amazing boyfriend and group of friends in my life that are very understanding when it comes to my MS.”
Like most people, Katie didn’t know a lot about MS before she was faced with it and explains she had some misconceptions.
“To be honest before my diagnosis I didn’t really know much about MS and I thought everyone who had it would end up in a wheelchair with a short life expectancy. I quickly learned that this isn’t the case. My doctor told me that many people with MS may never need a wheelchair or a walking aid. I now know that while there is no cure it can be managed with the right medication.”
“Sometimes I find the hardest thing about it is that I can get easily frustrated and find myself asking ‘why me?’, 0ften I ask ‘what I did to deserve this?’,” she admits.
“I find the future hard to think about too as MS is so unpredictable that you never know what’s around the corner or when the next attack will be and what damage it will leave.”
With her experience of the condition, Katie has shared what she would like others to know.
“I would like people to know that there is no cure for MS and we really want and need one. While yes, it can be managed with medication this is not curing it.”
She added: “You can be relapse-free for years but still have symptoms every day both visible or invisible. MS does not mean the end of the road. Every case of MS is different no two people are the same and even though someone might look perfectly fine doesn’t mean they don’t have a invisible illness.”
The 25-year-old also encouraged those who wish to learn more and become more educated to look at the work done my MS Ireland.
Multiple Sclerosis Ireland is the only national organisation providing information, support and advocacy services to the MS community.
The society work with people with MS, their families and carers and a range of stakeholders including health professionals, students and other interested in or concerned about MS. It is also focused on providing timely, person-centred services that create independence and choice for the person with MS and their family.
Thursday, May 30th is World MS Day.
You can join the charity in their 9000 steps challenge to help support the 9000+ people living with Multiple Sclerosis throughout Ireland.
It’s easy to join, wherever you live, whatever your fitness level, you can decide when and where you will complete your steps. You can choose to walk, run, dance, swim or even hop to complete your challenge. You can do it by yourself, with friends or family or get together a team with your work colleagues.
Take your steps, take a selfie and use the hashtag #MyInvisibleMS and make a donation.
For more info visit here.