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News and Opinions about MS, Health & Disability

Easy to forget children can have MS – but Gilenya may help them

Most people, myself included, tend to think of multiple sclerosis as a disease that affects adults. Although we know that it can affect children, they make up such a small percentage that it easy for us to forget them

The fact that children can get MS was underlined last week by a study that showed Gilenya (fingolimod) significantly delayed disability progression in children when compared with another drug. Results showed a reduction in the number of new lesions, as well as a reduction in brain shrinkage.

childrenSome 5 to 10% of people with MS experience their first symptoms before the age of 16. Therefore, it was apt that the study involved 215 children and adolescents aged 10 to 17 in 25 countries around the world.

There is little difference between MS in adults and children but, in children, it sets additional obstacles to be overcome.

First of all, MS is likely to disrupt a child’s schooling. However, there is support available to help your child to continue to study.

As all of us with MS are aware, the disease can cause cognitive problems. These can be more difficult for a child in school. There, pupils are expected to pay attention and absorb a great deal.

Family life: Children with MS at home

At home, all the family is affected in various way. These can include MS is a condition that affects the whole family. It can affect communication, relationships, mood and daily interactions – in short, every facet of family life.

According to the MS Society, children with MS may show aggression, depression and anxiety when they learn of the diagnosis. At the same time, brothers and sisters may resent, or feel jealous of extra attention that the child with MS is given.

Open discussion of the family’s concerns is important. Having some basic information about MS and how it might affect someone can help.

The MS Society has this advice for families that have a child with MS:

Talking to other families who are going through the same things as you can help. The MS Society’s online forums are great places to meet people in the same boat.

The MS Society helpline is there for anyone affected by MS, whatever their age.

Health and social care professionals can provide support to your child with MS, as well as the rest of the family

Respite care and short breaks are a valuable opportunity for you and your child to recharge your batteries. Read more about short breaks.

 Having MS in the family can have a financial impact. There may be benefits you can claim on behalf of your child.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Too much sunshine not good for young children or people with heat sensitivity

Having left a mainly editing and managing role in April, I now have more time to devote to writing. And, to be honest, that is where I am happiest.

Now I am writing for Medical News Today as well as paying much more attention to this blog. This had suffered through lack of time during the last year.

With more time available, I can now write articles that, before, were put on one side. And that starts today.

A news story caught my attention a couple of days ago. It was about a warning from NHS England and the Meteorological Office reminding parents that suntans on children are unhealthy.

Apparently, a survey suggests a third of parents believe, mistakenly, that going brown is good for children, But, a tan doesn’t stop the sun’s harmful UV rays. Instead, it is damaged skin trying to protect itself.

Clare Nasir, tv weather presenter and meteorologist, said: “Protecting against skin cancer isn’t something parents should leave to chance.

“UV levels are usually highest between May and September. Clouds don’t always stop UV rays, and unlike the sun’s warmth, it’s difficult to know when they may be harming you.”

Boost vitamin D but don’t overdo it

Dr Nigel Acheson, from NHS England, said although exposure to some sunlight was good for boosting vitamin D levels, people should not overdo it.

“We typically recommend that people spend no more than 10 to 15 minutes in the UK summer sun, unprotected, several times a week,” he said.

heat“People who spend more than 15 minutes in the sun on any given day, should apply sun protection factor 15 or higher.”

Nicola Smith, from Cancer Research UK, said: “There’s no such thing as a safe tan, from the sun or sunbeds.”

“While everyone needs a little bit of sun for vitamin D, most children and adults get enough from a short amount of time outside, less than it takes to burn.”

Apart from UV rays, too much sun can also hurt many of us, both with and without multiple sclerosis, who have heat sensitivity. Usually, this is caused by it being too hot, too cold or, for anyone like me, when it’s too changeable.

Top tips to avoid the sun’s heat and UV rays

British weather was too changeable for me, which is why Lisa and I moved to Spain. It gets really hot here but that’s ok for me because it’s constant.

So, what top tips are there to avoid being affected by the high summer temperature? Here’s a few:

  • Avoid extreme temperatures – If you love to be outdoors, limit your time in the sun. Go indoors to cool down. Don’t overheat or you’ll pay for it over the next few days.
  • Use cooling equipment – If you are outdoors for a time, make sure to keep cooling products available.
  • Keep yourself hydrated – Water is the best drink to fight dehydration and quench your thirst. Iced water is even better.
  • Wear lightweight clothing or clothes that breathe – Wear loose, lightweight and light coloured clothing. I recommend a light summer hat, too. That provides your own portable shade.
  • Plan ahead and remember timing is everything – If you are going to be outside, get your timing right. Avoid the hottest part of the day.

Heat sensitivity is unpleasant and makes symptoms of MS and other disabilities worse. But that is only temporary (pseudoexacerbations). The heat does not cause more damage.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

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Longer winter nights spark daylight saving debate

daylight

It’s time to say a final goodbye to summer and welcome the longer winter nights as Europe put the clocks back early Sunday morning while the USA follows suit next weekend.

Once again, as soon as Britain’s daylight saving time ends and the clocks go back one hour, there are calls to end the practice, Instead, some people want to keep summertime all year while others want to go to double summertime which would make British time equal with most of mainland Europe.

Supporters of such a move talk of the danger to children returning home from school in the dark. They are saying that there are more accidents at that time of day at this time of year. Maybe that’s true but have they considered the alternative? And by that I mean the risk of children suffering accidents on their way to school in the morning murkiness.

Then, of course, there are those who live further north. The days in winter are shorter in Scotland, for example, than in the south of England, so they notice the dark winter mornings more there; and David Cameron’s government does have to think about all the UK as it is still one country.

Of course, there is nothing new in the idea of not putting the clocks back. In fact, it has been tried before. From 1981 to 1971, the UK kept its daylight saving British Summertime all year round. It was ditched after the figures showed an increase in the number of people killed or seriously injured.

More recently, in 2011, a Conservative MP put forward a proposal to bring in permanent daylight saving time but it was dropped for lack of parliamentary time. An opinion poll that year found that 53% of Britons supported moving clocks forward an hour permanently while 32% opposed the proposed change.

As I suggested earlier, the idea was not welcomed by the Scots with Scottish Nationalist Party MP Angus MacNeil saying that any change would have “massive implications for the safety and wellbeing of everyone living north of Manchester”.

At this point, we all need to consider the farming community both in Scotland and elsewhere.

From personal knowledge of looking after farm animals all year through, I well remember the feeling of relief when the clocks went back to lighten the mornings. And that was in North Wales not in parts of Scotland where the sun wouldn’t rise until 10am. Even ignoring the risk of there being more deaths and injuries from accidents, I have to feel for dairy farmers, who wake up before 5am and would have to work even longer in the dark. Then there are other workers who need sunlight to carry out their jobs. They’d have to work later into the evening.

Perhaps, if some people are desperate to see an end to daylight saving time, to satisfy those north of the border, the UK should have a different time in Scotland to the rest of the UK. The Scots could have an independent time. That could be the first step along the rocky path leading towards the break-up of the supposedly ‘United’ Kingdom.

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