Online question and answer session

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Transcript

Please note that the transcript is not a word-for-word transcription. Repetitions, hesitations etc have been removed.

• Key:
  JB    Jess Brichto - Interviewer
  HC   Helen Chambers - MS Society spokesperson

JB Okay. I'm with Helen Chambers. She's from the MS society, and she's going to be talking to me today about MS in children. Hi, Helen.

HC Hi there.

JB Hello. And what is MS?

HC Well, MS is thought to be a disease of the immune system. And it affects the eyes and the brain and the spinal cord. And then the immune system is what protects us from the cold and the flu.

JB So what happens in MS?

HC Well, to understand what happens in MS, we need to understand what happens in the nervous system. And basically it’s been damaged. What happens is that messages don’t go from the brain, through the spinal cord to the rest of your body, so movements such as me, going like this to you, is affected and damaged.

Surrounding the nerve fibres is something called myelin, and that just protects the messages going from our brain to the rest of our body. And that's what gets damaged in MS. So basically, in MS, the myelin is damaged, and these messages just don’t go through as quickly. So when I'm just reaching out, that my brain, or rather the myelin kind of interrupts the signal, and so it happens a bit juddery, or it doesn’t happen at all. 

JB Okay, so why don’t those message actually get through?

HC Well, as I was saying earlier, it’s because the myelin is damaged, so, I'm just going to pick up my pencil, and if you imagine that this is your nervous system, and the myelin protects it, so nothing can damage your nerves. But then, if I put my fingers like this, something can damage your nerves. And that's what happens in MS. These bits in between here so, that the myelin becomes slowly more damaged, and eventually, your nerves look like this, and they can easily be broken. And because of that, no messages can get through. So you can imagine it as an electric cable. If you take a pair of scissors and chop it, suddenly your TV or your mobile phone doesn't charge up. That's how it doesn’t work.

JB Okay so it's a commonly held belief, I think, that only adults get MS. Is that true?

HC Unfortunately not. MS can happen to anyone. Almost at any time and unfortuantely children, yes, are affected too.

JB So can you catch MS? Or is it something that is passed to you through your parents, through your mum and dad?

HC Well, if your mum or dad has MS, then you may have a slightly increased chance of getting MS, but you can't catch it from them, like you can catch a cold. And you can't give it to any of your classmates if you had MS and you went to school. And no one can get it from you, as such, like you can catch a cold. 

JB So what are the symptoms?

HC There are quite a lot of symptoms, but just to give you a quick list, there can be symptoms such as changes in vision, muscle stiffness, weakness, problems with balance, numbness, tingling, and maybe even mood swings or speech difficulties, and problems with thinking and memory. 

JB That sounds like an awful lot of things.

HC It’s quite a long list, unfortunately, but not all of those things happen to people all at once. But generally, these symptoms tend to come and go, over a period of time. 

JB So all these symptoms, do they actually stop you from doing what you want to do?

HC No, not necessarily. I mean, everyone has good and bad days, but they shouldn’t stop you from having a full and enjoyable life. 

JB Can having MS affect a child at school?

HC Well, MS affects thinking and memory, so I guess it can have an impact at school. Children generally miss classes, or miss lessons, but hopefully teachers or schools are very understanding and help you catch up by giving you extra classes and maybe giving you some things to take home with you at home, or do with your parents. 

JB Okay, I've heard that fatigue is quite a common symptom. Can you explain more about that?

HC Well, fatigue is basically extreme tiredness. I mean, it's not just like us having a hard day at work, and going home and watching TV and chilling out a bit to feel a bit better. It’s overwhelming and almost overpowering, and feeling generally really quite rubbish at the end of the day or even not even, just in the middle of the day. There are medications and things out there, to help us, and there are different methods. I mean, you can learn different ways of doing things that can help you with managing fatigue. 

JB Do all people who have MS need a wheelchair?

HC No, not necessarily. I mean, MS is a very unpredictable disease, and we can never say for certainty that in the future you might not have a problem with walking. But only one in three people that have MS have to use a wheelchair. So you’ve got a pretty good chance of not having to use one. You might have to use some other walking aid, but not necessarily a wheelchair. 

JB So do people who have MS live as long as everyone else?

HC Well, most people with MS live a close to average life span; maybe slightly shortened, but not by much. 

JB So how do people find out if they’ve got MS?

HC Well, a child, or teenagers, it’s quite difficult to diagnose because there are lots of childhood illnesses that exhibit the same symptoms, so it may take quite some time. But basically it involves visiting the doctor’s, and having a good discussion with them about what's been going on. But there are other ways to diagnose MS, and that's by using an MRI. And that's where you have to go to a hospital, and your brain and your body get scanned through a giant machine, which, unfortunately, is very noisy. But then they’ll be able to look inside your brain, and inside your spinal cord and in your body, and look out for the signs of MS, which show up as big, white marks on the X-ray. 

JB So these tests, are any of them painful at all?

HC No. Not at all. I mean, as I said, an MRI is noisy, but it’s not painful. And there are other ways of testing for MS. A doctor can monitor your brainwaves by putting electrodes, or little sensors, on the side of your head, and looking at a screen, and determining if you have MS. And obviously that's not painful either, just a little bit of stickiness on your finger, like getting an Elastoplast, or something like that. 

JB Is there any cure for MS?

HC No, unfortunately at the moment there is no cure for MS. There is a lot of research going into it at the moment; I mean, there always has been, and hopefully they’ll find something. But at the moment there is no cure. There are lots of drugs, however, out there, to help you manage your symptoms, and the conditions, and make things, make your life a little bit easier. 

JB So what treatments are actually out there?

HC Well, there are several drugs out to help people with MS. Quite a lot of people take steroids to help with their relapses and there are also medications called disease modifying drugs, and these help people, or rather slow down the progression of their disease, slow down the progression of MS. 

JB So, Helen, how do these treatments actually work?

HC These medications are not magic. They don’t prevent all the relapses, and they do not guarantee that the relapses will be mild, but they do seem to help people with MS live healthy and productive lives. 

JB Okay, so how do these young people take their medications?

HC Well, most of the drugs are injected, and the thought of doing that obviously is kind of a bit horrible, but after a wee bit of time, with a bit of help from your mum and dad, hopefully you'll get used to it, and you'll get into a regular rhythm, and be able to do it yourself after a bit of practice as well. 

JB And what can children actually do to help themselves?

HC Well, lots of people find that keeping fit and being active is a really good thing, and also eating a healthy and balanced diet. You shouldn’t be eating too many Smarties, I'm afraid, or Rolos. But you might find that you like to explore things like complementary therapy or going to yoga, maybe, and many people with MS obviously, well, I hope they say, that keeping a positive outlook on life also helps them along the way. 

JB So where can young people who have MS get more information?

HC Well, it’s important to get as much information as you can. I mean, the Internet is a very good source, but you do need to be careful where you go, because obviously you shouldn’t really believe everything you read. The MS Society, we have a website, and the MS Society in America has a website, as well, and it has a really good chat board, if you want to talk to people in a similar situation about MS or about your life. And also we have lots of publications and things available as well, the MS Society in the UK. 

JB Helen, that was brilliant, very informative. Thank you very much.