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Al Jazeera Correspondent

'In my dreams, I am not disabled'

Can scientists come up with a cure for multiple sclerosis, and will it be in time to stop me ending up in a wheelchair?

Last updated: 15 Dec 2013 10:25
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Stephanie Scawen is determined to find out if she can avoid ending up in a wheelchair [Al Jazeera]

I am one of around two-and-a-half million people worldwide with multiple sclerosis (MS), but it is hard for me to admit – even to myself – that I am disabled. My dream is to one day be able to walk without a stick. But my biggest fear is that I am going end up in a wheelchair.

You never know when you are going to have an MS attack, they are completely unpredictable. So, the first thing I do when I wake up in the morning is check: Does everything feel right? Is anything not working properly?

MS is an autoimmune disease, which means my body attacks itself. It destroys myelin, a protective sheath that covers the nerves in my brain and spine, similar to the protective cover on an electrical wire. In an MS attack, that myelin is destroyed, exposing the nerves underneath to potential damage. Myelin also acts as a super conductor helping send messages from the brain to other parts of my body. But when there is damage, those messages cannot get through properly. So something simple, like picking up a cup of coffee, might take longer or my hands might shake as I do it.

There are different types of multiple sclerosis. Like most people, I have the relapsing remitting kind – which means I get attacks, followed by periods of remission when the symptoms go away. But often that can turn into the progressive kind, when you do not recover and just grow increasingly disabled. I am scared that will happen to me. But in an effort to prevent it happening, I have been reading up on the latest research. Some reports suggest that scientists are close to a cure. I want to find out how true that is, and to learn how I got MS.

Mysterious MS

MS is a mysterious illness. Although first identified around 150 years ago, its causes remain unclear.

MS & Me - Extra

But recent research in the Orkney Islands, in the far north of Scotland, may help to provide some answers. For over two years, Dr Jim Wilson and a team from Edinburgh University have been carrying out a study of multiple sclerosis there.

"People have long thought that Orkney has the ... highest rate of multiple sclerosis of anywhere in the world," says Wilson. "And we've just carried out a study, a proper scientific count of the people and we've shown that to be true. It is the hot spot. A very typical rate, let's say in England, might be very roughly 150 people per 100,000 who have it. We measured the rate here in Orkney at 402 per 100,000 - so it's really dramatically higher."

He believes there is a connection between MS and sunlight: "It shows a very clear relationship with how far away from the Equator people are .... So it's much more common in the far north than it is in the tropical areas of the world .... It's not very well understood. It's clearly to do with sunlight. And most people think it's to do with Vitamin D .... If you expose your skin to sunlight, it's made in your skin."

Wilson's team measured the levels of Vitamin D in the blood of around 2,000 Orkney residents, including people with MS. The findings – as yet unpublished – are convincing.

"It was significantly lower on average in MS patients .... I mean it's early days and it's unproven, but there's a lot of evidence now and I personally think that the link is nearly proven. I think that Vitamin D is very important in MS. It could help to prevent MS and it also might help to reduce the symptoms of multiple sclerosis and to slow down the progression, going forward," he says.

The genetics of MS

The team also took DNA samples from Orkney residents - and looked for common genetic variants in a sub-section of people with MS.

"There's one major genetic risk factor," explains Wilson. "It’s a genetic variant called DRB1 1501 ... it's a gene that encodes part of our immune system .... And it's obviously not functioning exactly right in many people who have MS."

According to my DNA test, I do not carry the DRB1 1501. But, Wilson explains, "there are a number of other genes they've tested here, including interleukins. They're sort of messengers in the immune system. And you carry a couple of these risk factors".

No one in my family has had MS, but my mother, maternal grandmother and sister all have rheumatoid arthritis. And I had a sister who had cancer, which is also autoimmune, like MS.

"From a genetic perspective, there are a number of variants that are shared across different autoimmune diseases. So there can be a propensity to having an autoimmune disease," explains Wilson.

So I may not have the gene variant most closely associated with MS, but I have inherited a predisposition to some kind of autoimmune disease.

While I cannot change my DNA, I can potentially reduce the severity of my MS symptoms through regular sunshine.

Hayley, Angela and Sanjay

I really thought I was going to die. I woke up in the morning and I couldn't get out of bed. I couldn't even sit up by myself.

Hayley, a 23-year-old MS patient

I know the symptoms of MS vary from person to person, but I did not realise by how much until I met Hayley, who is 23 and also has the relapsing remitting kind of MS. She was only diagnosed 18 months ago, and is determined not to let MS dictate her life.

"I thought I was losing my eye sight," she explains. "There was double vision. There were things blocking my vision like floaters in [my] eye."

"The worse relapse I had, I just couldn't stop being sick for hours ... and I really thought I was going to die," she says. "I woke up in the morning and I couldn't get out of bed. I couldn't even sit up by myself."

I have never been anywhere near the point where I have not been able to get out of bed.

Although I was diagnosed in my early 30s, MS can strike at any time.

Angela, who lives on the outskirts of London, was just 14 when her MS attacks started. She is now 18 and her symptoms are already quite severe.

"I think the main one is really bad fatigue. I get really tired quite quickly. It's not just a tiredness or laziness; it is an overwhelming sense of tiredness," Angela says, adding: "But I also get really bad headaches and I don't mean just the odd migraine. These are like crushing headaches and it can last all day. I’m in so much pain. I’ve started having problems with my walking now which is obviously a bit frightening for me and my parents."

"The first day I got diagnosed, [my doctor] asked me: 'What is your career path?' And I was like, 'Oh, I want to be a dancer'.  And he just said: 'I don't know if you'll be able to walk by the time you're ... 25.' That did hurt."

"I'm getting worse and I know I'm getting worse .... It's scary. But what else can I do? I can't exactly ... mope around feeling sorry for myself. I've just got to get on with life and if it's hitting me with this I'm just going to go and face it head on."

Angela may have given up her dreams of becoming a professional dancer, but she has not given up dancing. Despite her fatigue, she attends classes three times a week.

Blinding headaches and extreme fatigue are common with MS. Watching Angela, I think how lucky I am not to suffer these symptoms.

Around one-in-four people who have MS eventually end up in a wheelchair.

Like me, Sanjay was first diagnosed with relapsing remitting MS. But after about 15 years, that changed to the secondary progressive kind. She now uses a wheelchair.

"Emotionally you know I really felt a sense of major loss and increase in dependency," she says. "On the flip side, I'm incredibly grateful. I know it's a certain madness … but I can still see. I can still hear.  I've still got all my bits and bobs."

While I really admire Sanjay's philosophical approach to being in a wheelchair, right now, I am not sure that is something I could cope with. And, worryingly, there are no effective drug treatments for Sanjay.

Finding a cure

Stephanie Scawen is concerned that she will not be able to report from the field if her MS worsens [Al Jazeera]

My dream is to one day be able to walk without a stick. I ask Robin Franklin, a leading scientist and professor of neuroscience, if that might be possible, as according to international newspaper reports, his team of scientists at Cambridge University have made a major breakthrough in MS research.

In collaboration with Edinburgh University, Franklin's team made a ground-breaking discovery. They found a special molecule called RXR that can stimulate stem cells already in the brain to transform into the kind of cells that make myelin.

"We can now begin the process of developing drugs that can be the regenerative medicine for multiple sclerosis," he explains. "Now the hope is that regenerative medicine would be a way of addressing the progressive phase of the disease. At worst, slowing it down. If we're really lucky it will stop it. And if we're really, really lucky, we'll stop it sufficiently for the body to regain some function."

The common timeline for drug development from laboratory breakthrough to clinical intervention, Franklin says, is between 10 and 15 years. So a cure for MS will hopefully come in time for people newly diagnosed with the disease. But it may be too late to prevent me from needing a wheelchair.

My new drug

I am growing increasingly anxious that my MS is turning progressive. I love my job, but realistically I would not be able to report from the field in a wheelchair.

There are drugs to prevent MS attacks. But until now I have chosen not to take any because of the side effects. Now, however, the benefits may outweigh the risks.

At an appointment with my London consultant, Dr Kapoor, one of the country's leading neurologists and a specialist in multiple sclerosis, I undergo a medical examination before he gives me his assessment.

If you survive the first tablet, you survive the heart attack, that's it – you can stop worrying about it.

Suzanne, a MS patient

"Looking at you, you are a bit worse. But I think you got worse because you've had a couple of attacks and you haven't really recovered fully from those. And they've affected your legs .... I don't think you've gone secondary progressive .... You're still very much in the relapsing phase of MS. And, in a way, that's good because that's a more treatable phase."

I tell Dr Kapoor that I have decided to start on a new drug. Each pill costs around $100 and I will need to take one a day. He agrees that the time is right.

But before I start the new medication, I meet someone who is already taking that drug.  

Suzanne also has relapsing remitting MS – she has had it slightly longer than me – for about 20 years. The good news is that the drug she is taking, and the one I am due to take, can reduce future MS attacks by 50 percent. The bad news is that it has serious possible side effects, including the risk of heart failure when you take the first dose and macular oedema – a swelling in the eye – which can cause loss of vision.

"If you survive the first tablet, you survive the heart attack, that's it – you can stop worrying about it," says Suzanne who has been taking the medication for three months. "I have started to notice a difference. I just feel my walking is a little bit better."

Her good experience gives me hope that the new medication will work for me too. A cure for MS is genuinely possible, but may come too late for me. However, there is a chance that my new medication could stop my MS from getting worse – and that would be fantastic.

Who knows what the future holds. One thing I do know is that I will not give up on my dreams.

In my dreams, I dive. In my dreams, I am not disabled.

 
Al Jazeera Correspondent can be seen each week at the following times GMT: Thursday: 2000; Friday: 1200; Saturday: 0100; Sunday: 0600; Monday: 2000; Tuesday: 1130; Wednesday: 0100; Thursday: 0600.

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