John, 48, from Fauldhouse, West Lothian, who was diagnosed with MS 18 years ago, said: “I’m in a wheel-chair but I still want to enjoy a holiday the same as everyone else.

“The last one was such an awful experience that I’ve decided to challenge airlines who don’t provide facilities to allow us to use the toilet.

“There’s help available to get us on board a plane.

“But once we’re strapped into our seat, most airlines don’t carry a simple aisle chair, a small version of a wheelchair, which we need to access the toilet.

“These chairs are inexpensive – a few hundred pounds – but they’re crucial for someone who can’t walk.

“I’ve been on several long-haul US flights where aisle chairs are always available but it appears, for journeys of six hours and under, companies don’t make them available on all flights.

“Despite booking ahead and asking if an aisle chair was provided, and being assured it was, I was stranded on both legs of the journey and treated with discourtesy by Jet2 staff when we went to Tenerife in August.

“It was a four-hour flight and I was placed in the ninth row, well away from the toilets. Can you imagine my discomfort and the level of stress I was under after being told there was no aisle chair held on the plane?

“Knowing I was going to face the same nightmare on my way home really marred my holiday.”

European disability rules state: “In order to give disabled persons opportunities for air travel, assistance to meet their particular needs should be provided at the airport as well as on board aircraft by employing the necessary staff and equipment.”

John’s partner Sharron Rodden, 46, said: “We don’t expect airline staff to take John to the toilet. As his carer, I’ll take him if an aisle chair is provided.”

John’s brother is Labour shadow health secretary Neil Findlay. He said: “Airlines appear happy to take money from disabled passengers but are failing to provide the most basic service.

“There has to be a change in regulations to ensure that people with mobility problems are treated with the same dignity and respect as everyone else.”

John’s case is now being examined by disability law expert Patrick McGuire of Thompsons, who said: “The law is there to protect disabled citizens, and either the law is flawed and we need to challenge it or airlines are not applying it.

“Either way, we’ll be doing all we can to ensure this situation changes.”

Jet2.com said: “We are deeply sorry to hear of Mr Findlay’s experiences and offer sincerest apologies.”

Becky Duff, head of policy and communications at the MS Society in Scotland, said: “Equipment and support should be provided for disabled people to have the same travel opportunities as people without mobility problems.”

Travel watchdog ABTA said: “Providers have very clear legal obligations and if consumers have concerns they should address them to the company and the Civil Aviation Authority or ABTA.”

The Civil Aviation Authority said: “Passengers with special needs should contact airlines and choose whichever suits their requirements.”

Daily Record

The new study found the chances of developing multiple sclerosis are five per cent higher among those born in April and May, compared to the average risk.

The risk of developing MS was 5-10 per cent lower for babies born during the months of October and November.

Nearly 100,000 people in the UK have MS, the most common disabling neurological condition affecting young adults.

Previous research shows high levels of vitamin D in the body may protect against the disease.

But the latest study compared data on almost 152,000 people with MS with expected birth rates for the disease to explore the effect of the month of birth on the risk.

Dr Sreeram Ramagopalan, of Queen Mary University of London, Blizard Institute, and colleagues, said the study provided the most compelling evidence so far to justify telling women to take vitamin D supplements during pregnancy.

He said ‘Around 90 per cent of women are vitamin D deficient during the winter months which means pregnant women are especially at risk.

‘Research has been pointing this was for years but this is the biggest study of its kind. It may only be a small effect but it is now proven.

‘Taking supplements of 1,000 iu (international units) of vitamin D a day cannot do pregnant women any harm, and it is likely to reduce the incidence of this devastating disease’ he added.

It is already known that MS cases are higher in countries like Britain which are further away from the equator with relatively low sunlight levels.

Diabetes, asthma and life-threatening heart disease in babies are also linked to low levels of vitamin D in early life.

The latest study pooled previously published data on month of birth and MS cases, and included countries such as Britain at latitudes 52 degrees and greater from the equator.

This means insufficiently strong ultraviolet light reaches the skin between October and March to manufacture enough vitamin D during the winter months.

The seasonal trends showed a significant rise in risk of MS among those born in April and May and a significantly lower risk for those born in October and November.

The findings are published in the Journal of Neurology, Neurosurgery and Psychiatry (must credit).

Official policy in the UK is that pregnant women should take a vitamin D supplement but few are actually advised by doctors and midwives to do so.

Dr Ramagopalan said the notion that vitamin D deficiency contributed to MS was first aired in the 1960s.

‘It was laughed at’ he said. ‘No one could believe a simple vitamin would have this sort of impact. It is only by consistent replication of studies showing a link that we can say it is a genuine one.

‘We believe the Government should get behind this and tell midwives and pregnant women that taking supplements can have health benefits for the baby’ he said.

Oliver Gillie of the Health Research Forum, who campaigns for greater awareness of vitamin D benefits, said many experts were convinced that vitamin D supplements could potentially protect against MS and other diseases in populations where sunshine levels were too low.

He said ‘The Government needs to ensure local authorities take this on board, it’s a very cheap way of improving health.’

Daily Mail By JENNY HOPE

Impressed by the response on the social networking site, M&S shot the little boy for a photographic campaign.

They were so happy with the results that they made the decision to cast Seb in their 2012 Christmas TV campaign too.

The 2012 advert, which will run in prime time slots over the next six weeks, sees the youngster wearing a cute bow tie and knitted cardigan as he dances and plays with other children.

Mother Caroline White, from Bath, says she contacted the store in an effort to break down some of the stereotypes surrounding disability.

But the 39-year-old project manager has admitted to feeling overwhelmed by the news that her ‘mischievous’ son – who has also modelled for JoJo Maman Bebe – was to star in a major television campaign.

‘I felt like we’d made a really big breakthrough,’ she told The Times.

Mrs White, who said she was on the verge of tears when she got the phone call from Marks & Spencer to ask if Seb would like to take part, said her son isn’t singled out in the advert because of his Down’s Syndrome.

‘He is just one of the group of children dancing and playing,’ she said.

‘It says he is one of the cool kids too, that he is just like everyone else, and that’s how it should be.’

Mrs White has told how, after having Seb, she noticed an absence of anything other than ‘lots of ads with hundreds of beautifully perfect kids’.

This year, while shopping for a uniform for her now four-year-old, she said it hit her again that ‘all the “different” children out there that are starting school are not really represented’.

Her subsequent post on the Marks & Spencer Facebook page, which was accompanied by a photo of Seb, read: ‘He has striking, unusual features, charms the pants off everyone he meets, and his little face is full of magic and mischief.

‘So here’s the thing. He also happens to have Down’s Syndrome. When he was born I was shocked to my core.

‘I knew nothing about the condition and what should have been the happiest day of my life was the worst…My heartfelt plight is to get him ‘out there’ and get the message across that different isn’t any less wonderful – or even that different.’

M&S was one of a number of retailers contacted by Mrs White, but it was the only one that responded.

The determined mother has said she is hoping her son’s starring role in the brand’s new festive advert – directed by the British pop video specialist behind the music video for Beyonce’s hit Single Ladies – will go further in putting paid to some of the misconceptions surrounding Down’s Syndrome.

Daily Mail

Alemtuzumab has been used to treat MS for close to two decades, but it has never been approved for this use. It is given by IV infusion.

The drug not only reduced relapses, but improved disability associated with MS, such as loss of coordination or difficulty walking, in some patients.

Side effects include infusion reactions, infections, and potentially serious autoimmune disorders. Patients taking it must be followed closely.

“In the menu of treatment choices for MS patients, I think alemtuzumab falls into the ‘high-reward, high-risk’ category,” says Alasdair Coles, MD, of Britain’s University of Cambridge, who led one of the newly published studies.

“No other drug has been shown to offer the benefits in terms of disability improvement that this drug shows,” he says. “It comes with problems, but these problems are manageable.”

400,000 MS Patients in U.S.

The National MS Society estimates that about 400,000 people in the United States have been diagnosed with multiple sclerosis, and most (85%) have the relapsing-remitting form of the disease, in which symptoms come and go.

These symptoms can include loss of feeling, coordination, and mobility, problems with thinking and vision, and depression.

In one of the two newly published studies, University of Cambridge researchers followed 563 previously untreated patients treated with either alemtuzumab or interferon beta.

Two years later, 22% of the alemtuzumab-treated patients had relapsed, compared to 40% of those treated with interferon beta.

In the second study, which included 840 patients whose MS symptoms were not being controlled with other treatments, treatment with alemtuzumab was associated with 35% of patients relapsing over two years, compared to a 51% relapse rate among those treated with interferon beta.

Patients in this study were also less likely to have additional MS-related disabilities after two years when they took alemtuzumab; 13% had disabilities compared to 20% of interferon-treated patients.

1 in 3 Users Develop Autoimmune Disease

In clinical practice, alemtuzumab has most often been used to treat patients who don’t respond to other treatments or are no longer responding to them.

Coles says he believes this is how the drug will continue to be used if it is approved as an MS drug in the U.K. and the U.S.

He adds that about 1 in 3 patients who take the drug for MS develop an autoimmune disorder that affects the thyroid, and about 1 in 100 develop a disorder that involves blood platelets, which are involved in clotting and stopping bleeding.

He says both conditions, while potentially serious, can be easily managed if patients are followed closely.

“Close monitoring is critical because these side effects tend to appear a year or two after treatment, when MS symptoms are often under control and patients want to get on with their lives,” he says.

National MS Society Chief Research Officer Tim Coetzee, PhD, says he does not see this as a big deterrent, since many of the newer drugs for multiple sclerosis also require close monitoring.

“Given the choice between having a treatment that requires aggressive monitoring and not having that treatment at all, I believe that most patients will take the treatment any day of the week,” he says.

Drug’s Cost as MS Treatment in Question

The drug maker Genzyme plans to market alemtuzumab as an MS treatment in the U.S. and Europe, pending approval by government regulators. The drug will not be available to MS patients during the approval process.

In an editorial published with the two studies, editors of the journal Lancet express concerns that the drug will be too expensive for patients and health systems when it is reintroduced as an MS treatment.

“Finding promising treatments such as alemtuzumab is important,” they write. “But so is keeping alemtuzumab accessible and affordable if its early success in these trials proves to be of enduring value.”

WebMD

However, there is concern that a drugs company is about to increase the cost of the drug as a result.

Around 100,000 people in the UK have multiple sclerosis. When the condition is diagnosed most will have a form of the disease know as relapsing-remitting MS, in which the symptoms can almost disappear for a time, before suddenly returning.

Built from scratch
The researchers tested a leukaemia drug, alemtuzumab, which had shown benefits for MS in small studies.

In leukaemia, a blood cancer, it controls the excess production of white blood cells. In MS patients, the dose eliminates the immune cells entirely, forcing a new immune system to be built from scratch which should not attack the nerves.

Two trials, published in the Lancet medical journal, compared the effectiveness of alemtuzumab with a first-choice drug, interferon beta-1a.

One compared the effectiveness in patients given the drug after being diagnosed, the other looked at patients given the drug after other treatments had failed.

Both showed the drug was around 50% more effective at preventing relapses and patients had less disability at the end of the study than when they started.

Dr Alasdair Coles, from the University of Cambridge, said: “Although other MS drugs have emerged over the last year, which is certainly good news for patients, none has shown superior effects on disability when compared to interferon except alemtuzumab.

“No other treatment has led to improvements in disability.”

He told the BBC: “It is certainly the most effective MS drug, based on these clinical trials, but this is definitely not a cure.”

However, he warned there were side-effects such as the risk of infection from a depleted immune system which meant the drug would not be suitable for everyone.

He said he thought the drug would be most useful for patients for whom standard treatment had failed and in a “minority” of patients as a first-choice drug.

Eventually relapsing-remitting MS can become progressive MS as the good spells become shorter and less frequent. The drug will have no effect on this form of the disease.

Expense fears
The drug has been withdrawn from the market in Europe and the US as the manufacturer, Genzyme, intends to have it licensed as a treatment for MS.

A Lancet editorial warns: “There is concern that with a licence for multiple sclerosis, the cost of alemtuzumab could rise and might become too expensive for many patients and health systems.

“Finding promising treatments such as alemtuzumab is important. But so is keeping alemtuzumab accessible and affordable.”

Dr Doug Brown, head of biomedical research at the MS Society, said: “These results are great news for people with relapsing-remitting multiple sclerosis.

“Alemtuzumab has been found to be an effective treatment for people with MS – but it’s only useful to them if it’s available on the NHS.

“We urge Genzyme to price the treatment responsibly so that if it’s licensed, it’s deemed cost-effective on the NHS.”

The company said it would not come up with a price for the drug “until it is approved by regulatory authorities” and that it would “engage constructively” with the National Institute for Health and Clinical Excellence, which evaluates the cost-effectiveness of drugs for use in the NHS.

bbc

Sounds pretty normal for a 41-year-old woman? Of course. But on a bright April day 15 years ago,
I didn’t think a time like this would be possible for me. That was when my life stopped being
‘normal’ – the day I was diagnosed with the incurable neurological condition multiple sclerosis (MS).

Some pivotal moments of your life are forever frozen in time, like a photograph. Receiving my MS diagnosis at the age of 25 is one of those. I can still picture the clinical room, with its white walls and harsh lighting, and see the blank features of the neurologist who told me with no emotion, ‘I am 99 per cent certain you have multiple sclerosis, which the MRI scan will confirm. Do you have any questions?’

I had a million questions but, at that moment, I was too shocked to think of any. Instead, I walked out of the hospital into the green square outside, had a cigarette, and rang my parents to tell them the bad news. My mum blamed herself, just as she always does, even though MS is not directly hereditary (there’s a genetic component but the disease may be caused by a number of factors, many still unknown).

‘I wish I could have read about the best- instead of the worst-case scenarios’

She said she wished it was her instead. Then I took refuge in a nearby pub. Over a stiff drink, I told my then boyfriend, Steve, that I would understand if he wanted to leave me, but that if he was going to do so, he should go right now. We’d only been living together for a few months. He said that he loved me and wanted to stay, and that together we would face whatever my MS might throw at me.
As someone who has never been of the ‘glass half full’ persuasion, what I expected from my diagnosis of MS was grim.

To ignorant me, the future looked something like this: I would experience progressive disability leading to paralysis and a wheelchair and, ultimately, death by choking. Along the way I’d suffer pain, blindness and incontinence. That’s what I’d seen in TV programmes and in charity campaigns. I particularly remembered a powerful advertising campaign, which I’d noticed as a teenager in the 1980s, showing young people with parts of their anatomies – their spines or eyes – torn out. At 25, I thought my life was over.

The symptoms I’d experienced in the two years preceding my diagnosis had been scary and unpleasant. They started with blurred vision and a painful eyeball, which I put down to spending too much time staring at the computer.

Instead, it turned out that I had something called optic neuritis – inflammation of the optic nerve, which links the eye to the brain. Neither the ophthalmologist nor the neurologist who treated me at the eye hospital told me it was often the first symptom of MS. They just said it would get better, which it did. MS symptoms often come and go, particularly in the early stages.

Then, about 18 months later, when I was three days into a new journalism job, I woke in the morning, tried to get out of bed and collapsed on to the floor like a rag doll. I couldn’t control my legs, which felt completely numb and tight, as if encased in a plaster cast. At the same time, the other eye became painful and blurry. It was then that my GP referred me for hospital tests. By the time my legs had got better – it took about six weeks – I’d done enough research on the internet to know that I probably had MS. Over the course of the next few months, a series of blood tests, examinations and scans confirmed it.

Before MS, I’d always been a healthy person, so suddenly having to redefine my self-image as sick and potentially disabled was extremely unsettling. I found myself a member of a club I had no interest in joining, with a horrible awareness of my own mortality. That isn’t usual at 25. I couldn’t relate to my friends, who were still carefree, irresponsible, looking forward to their future careers, going out and having fun.

While they were booking backpacking holidays to Cambodia or Thailand, I was negotiating extortionate insurance premiums for a weekend in Europe, and wondering what would happen if I had a relapse away from home. While they were spending their wages in wine bars and nightclubs, I was worrying about paying for income protection and life insurance (almost impossible for me to obtain at the time).

It didn’t help that MS is an invisible disease so, outwardly, I looked the same. For at least a year, people would greet me with the words, ‘But you look so well!’ as though they were disappointed that I hadn’t arrived, muscles wasted, in a wheelchair. Some ‘friends’ got annoyed when I had to cancel at the last minute because of crippling fatigue. One actually stopped talking to me because I couldn’t make it to her birthday drinks, even though I offered to take her out for a meal on another day and bought her a big present.

Having MS messed with my head. It may sound contrary but, for a while, being confronted with my own mortality made me feel immortal. I reasoned that now I had MS – the thing that would kill me – I couldn’t possibly get anything else, and must therefore be immune to cancer, heart disease or flu. So I smoked too much, spent too much, lived for the day, because there wasn’t going to be a tomorrow. Of course, that’s rubbish. Most people with MS, I soon learned, live a near-normal lifespan, dying of the same common or garden diseases as anyone else.

Over time, as I came to terms with my MS, I became more rational about it and began to reassess my life. Steve and I married a year after my diagnosis, but I put off having kids because, expecting the worst, I didn’t think it was fair to impose a lifetime of caring on my children.

‘Having MS messed with my head. It may sound contrary but, for a while, being confronted with my own mortality made me feel immortal’

There were positive changes too: I packed in my dull, corporate writing job and went freelance – something I’d always wanted to do – thinking that if I didn’t do it now, I might not be able to in the future. That proved to be the best decision I ever made. Within a couple of years I’d established myself as a successful freelance journalist and agony aunt. I had my first novel, Loving Danny, published in 2006. I’ve now written five novels for teenagers, and am working on the sixth, which will be published in 2013.

I also became involved with the MS Society, helping to produce and write their membership magazine, and to raise the profile of the condition. This gave me opportunities I’d never expected: an invitation to a private party at 10 Downing Street, an appearance on the catwalk at a fashion show, and
a never-to-be-repeated role as a ‘leg model’ for an advertising campaign. My pins, and my favourite red sparkly shoes, were plastered all over the London Underground, as well as on hoardings and in magazines and newspapers.

I was able to achieve all this because something unexpected happened: my MS didn’t progress as I’d feared. I continued to have sporadic symptoms – tingling, numbness, electric-shock-like pains and pins and needles, plus fatigue and occasional distorted vision – but I stopped having proper relapses. It turned out that, like approximately 25 per cent of people with my condition, I have what’s known as benign MS. It can only be diagnosed retrospectively, ten to 15 years or more after initial diagnosis, when there has been little or no disability progression, so nobody could have predicted this. Nor did they mention its possibility to me. It was a case of watching and waiting.

Having benign MS makes me very lucky. Of course, I’d be luckier if I didn’t have MS at all, but, given the terrible experience of many people with the condition, the fact that I am still mobile and able to live an active life is something for which I am truly grateful.

On the other hand, having benign MS is rather a poisoned chalice. I feel as if I am living in limbo, neither ill nor well. I often feel guilty, even a fraud, when I’m among people with more severe MS at charity events.

At a party, one woman in a wheelchair watched me walk across the room to a buffet, then questioned whether I really had the condition because I walked ‘so easily’. People have stopped asking me how I am; having an incurable illness is not as unusual in your 40s as in your 20s. But I’m not always quite fit enough to function completely normally in the wider world, or allowed to forget I have MS.

I live with daily uncertainty – could this niggly new symptom be a relapse or will it disappear in a few hours? I still worry about planning anything too far ahead, or journeying anywhere too remote.
And, unfortunately, ‘benign MS’ doesn’t always remain benign. The disease is still active in my brain. As statistics show (after 20 years, the 25 per cent of benign cases has reduced to 15 to 20 per cent), I could get worse and may still be facing future disability. Again, all I can do is watch and wait.

I continue to have to deal with the implications of the MS label on insurance (it’s always more expensive), on relationships (there’s always a chance that I may become dependent) and on my employment prospects (I haven’t applied for a job since my diagnosis, as I’m freelance, but know many people with MS who have been discriminated against). For me, having benign MS is a bit like being forced to drag around a heavy, dangerous dog, which might, without warning, one day jump up and bite me.

Sadly, my marriage to Steve has not lasted and we are going through a divorce, although this has nothing to do with my MS. I always feared that nobody else would want to take on my condition, but that hasn’t proved to be true. My boyfriend Mickael, who I met in France while writing one of my novels, has taken it in his stride, with a typical French c’est la vie attitude.

We are now expecting our first child. Having put off having children for so long, I decided I couldn’t throw away the chance of a family on what might never happen. Women with MS are no longer told not to reproduce; studies show that pregnancy hormones actually improve symptoms and, although there’s a higher chance of a relapse following a baby’s birth, there’s no long-term impact on future disability.

Sometimes, when I’m feeling well, I wonder if I’d have been better off not knowing I had MS. If the doctors hadn’t told me, I’d just have put my weird symptoms down to something else and got on with my life. Then again, with around 80 per cent of people with MS developing some level of disability within 20 years, it would have been irresponsible of the doctors not to tell me. I’m also aware that people like me are very useful to researchers who are trying to find out why some people’s MS progresses more quickly than others. Is it something I’m doing? Something I’m not doing? My genes? Or just jolly good luck?

I do wish I’d known that MS could follow such a mild course when I was diagnosed. I wish I could have read about the best- instead of the worst-case scenarios. The problem is that people like me don’t engender sympathy or the desire to put your hand in your pocket, so charities tend to ignore us. As a result, the world only sees the most serious cases. And many people with benign MS choose to remain invisible.

In a strange way, I’m glad I was diagnosed with MS. It gave my life a focus. Without it, I probably wouldn’t have gone freelance or penned my first novel. I wouldn’t have got involved with the MS Society, or encountered many of the wonderful people I’ve met.

So, if I could beam myself back 15 years in time, into that diagnosis room, I wouldn’t say, ‘Don’t worry, your MS isn’t going to be a big deal.’ Instead, I’d give myself a hug, tell myself that whatever happened I would cope and that life would still be good. Ultimately, I would change nothing.

Mail Online

Dr. Helen Tremlett has found that some MS patients experience ‘natural’ improvements (Credit: UBC/VCHRI).