MS is horrible: it picks on people in the prime of their lives and knocks people off their feet for weeks at a time. It can leave them too weak to get out of bed, unable to swallow and with a “brain fog” making it hard to even think – and that’s not even the half it.
MS is horrible: the array of symptoms the 2.3million affected people around the world deal with on a daily basis is never ending: spasticity, cognitive issues, bladder dysfunction, bowel dysfunction, sexual dysfunction, fatigue – I could go on.
MS is horrible, but most people have no idea what it is or the devastating impact it has on every aspect of people’s lives.
This lack of awareness means people with MS are often mistaken for being drunk and are accused of being lazy when they can’t make it through a full day of work or get the kids’ dinner ready.
They are told they just need to “eat properly” or “take more exercise” and constantly fend off comments such as “you don’t look ill” or “aren’t you better yet?”. Things like “I know what you mean about the fatigue, I get really tired”.
MS is horrible. It is a neurological disease that destroys myelin. Myelin is a fatty protein that forms a sheath around the axons of nerve cells (the part of the cell that transmits messages to other nerves cells) and acts as insulation to the axon, helping maintain the speed of transmission of messages.
The damage MS does to myelin interrupts and blocks nerve messages. In the early stages of disease, the central nervous system can repair some areas, but that ability lessons as the disease progresses.
As the disease prompts the immune system to attack the myelin, lesions develop on the brain and can only be seen on MRI scans.
There are different types of the condition. In relapsing-remitting MS (RRMS), people are relatively symptom-free for periods of time that are interrupted by attacks that can leave them in hospital for weeks, or even months, at a time.
For about the last decade, disease-modifying drugs (DMDs) have been able to for the most part, keep this form of the disease under control. However, they are not a cure, they are not without risk and a large proportion of people who need them there receiving them.
They don’t necessarily stop the disease progressing into secondary progressive MS (SPMS), defined by the MS Society as “a sustained build-up of disability, independent of any relapses”.
On average, around 65% of people with RRMS will develop SPMS 15 years after being diagnosed.
Primary progressive MS (PPMS) is characterised by progression of disability from the onset without recovery periods. Symptoms start subtle and develop to life-changing proportions over time.
MS is horrible. In many countries, it is the most common cause of disability in young adults, and as many as 60% of those diagnosed will be unable to walk without assistance 20 years after developing it. Disease onset happens, on average, at the age of 30.
MS is horrible, yet no one knows what causes it and no one knows what might cure it.
Cause and cure?
Of course, there are theories, some of which jump out to even the non-initiated when looking at a heat map of global prevalence. As a general rule of thumb, the further you are from the equator, the higher the number of people with MS.
In the UK, it’s 85,000, or 143.8 people with MS per 100,000 population. In Brazil, the figure is 7,000, or four people with MS per 100,000 population.
These statistics are compounded even further when you look at the numbers from the UK. Studies have shown the rate to be 100 to 140 per 100,000 in England and Wales, 170 per 100,000 in Northern Ireland and 190 in Scotland.
Work carried out in the north east of Scotland found the level to be 229 in Aberdeen, 295 in Shetland and 402 in Orkney. One MS nurse working in the Highlands told me the disease was simply part of life there.
This pattern has, inevitably, led to countless research projects confirming that vitamin D, or lack of it, has a bearing on the probability of developing MS, but sunlight is by no means the whole story.
In sunny Australia, there are an estimated 12,000 cases, or 63.8 per 100,000.
Some experts have blamed the spread of ‘Viking genes’ for the higher rates in areas colonised by white Europeans, but it still doesn’t explain why, globally, there are twice as many women as men living with MS.
There is also evidence that exposure to the Epstein-Barr virus is a risk factor, and in all probability, a mixture of all of these factors causes the MS.
Whatever causes it: MS is horrible. Yet the people I meet who are living with it are not beaten by it. They find ways to manage it. They stay in work, they finish degrees, they write books, they have children: they live their lives.
This is no small part owing to the small army of MS specialist nurses and therapists we work with on daily basis.
They blow me away with the lengths they go to support their patients and yet they are constantly fighting to justify the funding for their own jobs as the NHS looks for ways to save money – but that’s a different blog.
This one has a simple message. Next time someone tells you they have MS, don’t judge, don’t talk: just listen.
Published on: February 18, 2015