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News and Opinions about MS, Health & Disability

Sensitivity to heat not affected by summer sunshine

heat

As summer continues with temperatures in the 30°s C (high 80°s), the hottest days now seem to be behind us here in the south of Spain. The temperatures peaked at over 100°, so the high 80°s is quite pleasant.

What’s more, the good news is that the hot weather has not caused me any heat sensitivity problems at all. But then, that’s exactly what I expected. And that is because my heat sensitivity is triggered by changes in temperature not consistent heat.

Some people were concerned about heat exhaustion when the learned that Lisa ad I announced we were moving to Spain, two years ago. But after a series of sudden temperature changes experienced in the UK, this is a walk in the park.

Heat in your marriage

Talking of my beloved Lisa, she never ceases to amaze me with her selfless dedication to my wellbeing.

I have heard from so many people with MS who have split up ad divorced when their partners decide that a life as a caregiver isn’t for them. It is so sad.

Lisa has known that I have MS right from the start of our relationship, I never tried to hide it. She agreed to marry me knowing what was in store for us both. Furthermore, her granddad had MS too, so she knew more than most husbands and wives when their spouses are diagnosed as having MS.

Perhaps that is not incredible, perhaps it should be expected but there are many who have found that not to be the case. The “till death do us part” of the marriage vows appears to have been lost on their partners.

Do you have the loving support of your spouse or have you split up? And just how does heat sensitivity affect you, or doesn’t it? Please let me know.

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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 Healthline, the fastest growing health information site. 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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Sunscreen compounds help suppress MS symptoms

Vitamin D, whether gained naturally with the help of sunshine or from a supplement, is widely seen as being beneficial if you have MS. Certainly, I have experienced a benefit from taking tablets on a daily basis.

Now, though, scientists are saying that sunscreen, that helps block the sun’s rays, can help suppress symptoms of the disease. At least, two ingredients of the sunscreen do the suppressing – and it was proved to work in mice.

sunscreen

Dr Hector DeLuca,, research team leader.

The ingredients are salate derivatives, which are nonsteroidal anti-inflammatory drugs.

University of Wisconsin, Madison, researchers’ study was published their study in Proceedings of the National Academy of Sciences. It was titled “Salate derivatives found in sunscreens block experimental autoimmune encephalomyelitis in mice.”

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Symptoms of MS can show years before disease itself

For once, I am pleased to know that I am not alone. Researchers in Canada report that people with multiple sclerosis can show symptoms of something wrong five years before disease onset. This is much earlier than previously thought, but just not as early as my own experience.

Let me explain. My first indication that all was not well was in the mid-1980s and doctors were concerned enough to order a lumbar puncture (spinal tap). However, for whatever reason, the result was negative. Doctors said don’t worry, it’s nothing serious.

Almost 20 years later, following further symptoms and new concerns of mine, I had more tests.  These showed I had MS, and the neurologist told me that he had gone through my medical records and found evidence of MS more than 25 years earlier. So, it looks like the 1980s’ lumbar puncture was a false negative.

The Canadian research, published in Lancet Neurology, and reviewed by Science Daily, is a first step toward identifying red flags. These should help doctors screen for the disease and start interventions earlier.

symptoms

Dr Helen Tremlett of the University of British Columbia.

“Proving that people with multiple sclerosis have already changed their behaviour in the five years before even the earliest medical recognition of the condition is very important. It means we have to look beyond those five years to understand how it is caused,” said Dr Helen Tremlett. She is senior author of the study and an associate professor for neurology in the department of medicine at the Djavad Mowafaghian Centre for Brain Health.

Symptoms well before MS recognized

The researchers examined health records of 14,000 people with multiple sclerosis over a 20-year period and compared them to the health records of 72,000 people without the disease. This study showed there is a phase where people show symptoms before multiple sclerosis is medically recognized.

“There’s something going on here that makes this population of people unique,” said José Wijnands, first author of the manuscript. He is a postdoctoral fellow and a Michael Smith Foundation for Health Research trainee.

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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 Healthline, the fastest growing health information site. 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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MS featured in story lines on both the large and small screen

bad days

Multiple sclerosis was introduced as a story line in top UK soap Coronation Street four months ago. That was when Johnny Connor (played by Richard Hawley) received a diagnosis of the disease. And that got me thinking about other portrayals of people with MS on film and television.

But let’s start with Cornonation Street. It’s Britain’s longest-running soap opera, first broadcast in 1960, and has never shied away from social issues. These have included drug abuse, wrongful imprisonment, and even murder.

Writing about the diagnosis on its website, the MS Society commented: “Leading up to this revelation, Connor had struggled with his balance and appeared tired and impatient. He agrees to see a doctor at the insistence of his daughter Kate (Faye Brooks), but then tries to keep his MS a secret from her and from his fiancée, Jenny Bradley (Sally Ann Matthews).”

He eventually admits the truth to his daughter but calls off his wedding to Jenny, as he doesn’t want her to feel obliged to be his caregiver.

Trainwreck, a romantic comedy with Amy Schumer, tells the story of a woman afraid of commitment who finally meets Mr. Right, played by Bill Hader.

The movie features Colin Quinn as Gordon Townsend. He is a fictional version of Schumer’s real father, who was diagnosed with multiple sclerosis when Amy was 12. In the movie, Quinn’s character has MS and struggles with complications of the disease.

story

Martin Sheen as President Josiah Bartlet in The West Wing.

Fans of the award-winning TV show The West Wing will know the main character is the, a President of the United States played by Martin Sheen. He had relapsing-remitting MS while in office. The show’s producer researched illnesses that could be debilitating but not fatal and that could be difficult to diagnose.

Sheen’s character, President Bartlet, managed to keep his symptoms under control in the public eye. But MS became a central story line when he failed to make his disease public during his election campaign.

MS story line presidential in West Wing

The West Wing’s portrayal of multiple sclerosis through Bartlet was applauded by Mike Dugan, then president of the National Multiple Sclerosis Society. Dugan, now president emeritus, said the group was pleased the character was a world leader. The society welcomed the fact the show educated viewers about MS and made it clear the disease is not fatal.  It was also pleased that Bartlet was shown as to take advantage of medical breakthroughs to treat his condition.

Dugan said: “Since fiction often becomes more real to people than fact, President Bartlet’s life with MS has potential for great good. The public will become more accepting of individuals with MS. And individuals with MS will become more accepting of themselves and their abilities to lead fulfilling lives.”

Chicago Hope was set in a hospital in Chicago. In 1995, it featured the role of an MS patient for comedian and movie star Richard Pryor, who had multiple sclerosis in real life. In the episode, Pryor played Joe Springer, a character embittered by his MS and hoping to find some kind of miracle surgery that could enable him to walk again. Needless to say, he doesn’t find what he’s looking for.

I am encouraged that film and television programme makers continue to include MS, and other illnesses, in their stories. The more publicity, the greater public awareness, the better.

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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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Good and bad days on the MS merry-go-round of life

bad days

Pride becomes before a fall, or so the saying goes, and that certainly seems true for me.  I had been getting around a lot more easily, feeling pleased, using my new rollator but then …

Ok, all of us who live with multiple sclerosis have good and bad days. Good days when we find it fairly easy to get around or do things; bad days when the opposite is true.

Two days ago, all was well. I was out and about and used my rollator to help me walk into our local pharmacy to collect my medications. Feeling comfortable and at ease, I felt strong and confident.

Then I drove home where, again using my rollator, walked up the ramp to the front door and went indoors.

Yesterday, regretfully, was not the same story. Not by a long shot!

I went out the front door, started down the ramp and my legs soon felt shaky and my arms so weak that I was unable to support myself on the rollator. It was no surprise when I sank to the ground. After a few minutes, by sitting on the side of the ramp, I managed to regain my feet and made my way to the back of our car, where Lisa had my wheelchair ready.

Bad days are not so easy

All that was left to do was to walk across some gravel and transfer from the rollator to my wheelchair. Easy right? Well, yes, on a good day. Even on a moderate day. But yesterday was neither of those, it was a very bad day; bad to ******* awful.

And that’s why my easy transfer ended up causing me to fall again, this time in the quiet road outside our home. The sky was blue, the sun blazing down. It was midday, and very hot. Remember, we live in the south of Spain and today it got to 37°C, which is almost 99°F, and that’s the shade temperature. I was in direct sunlight, the humidity was high. It was hot. It’s been like that for weeks.

I made several unsuccessful attempts to get up but, eventually, Lisa phoned for help. In next to no time Eddie and Bob arrived and got me off the road surface and safely back in my wheelchair.

Difficulty resolved. Today is another day, I wonder what that will bring. Let’s hope it is a good one.

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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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Zinbryta use restricted in Europe after a death and four serious liver injuries

The European Medicines Agency (EMA) has restricted the use of multiple sclerosis drug Zinbryta. The agency took action after a patient died from liver injury (fulminant liver failure). The patient was in an ongoing observational study. Four cases of serious liver injury have also been reported.

We are all likely to experience some side effect of any medication we take, whether for multiple sclerosis or some other disease. Most of us, hopefully, will only have minor problems, if any, but some will be badly affected.

All medicine manufacturers provide a list of their drugs’ side effects, from major to minor, from common to rare. Pharmaceutical companies provide this information for the benefit of patients, not just healthcare professionals.

And, we need to take those lists seriously. After all, it is our health that is on the line.

I always pay close attention to news of new drugs approved for use in the treatment of MS. But, no matter how good the claimed benefits appear, I focus on the possible side effects admitted by the manufacturer.

Now, that is not to say that all disease modifying therapies (DMTs) are bad for us. But we need to balance benefits against the disadvantaged of possible side effects. Everyone must make their own decision.

Such decisions are personal. I have never accepted any DMT.

Zinbryta – liver damage risk known when approved

zinbrytaZinbryta (daclizumab) is one such DMT and its side effects include the risk of liver damage. The EU knew this when it approved the drug in July 2016. In fact, it put several measures in place to manage this risk. These included the requirement to monitor liver function and provide educational materials to healthcare professionals and patients on the risk of liver damage.

Now, though, a year later, the EMA has provisionally restricted the use of the medicine to:

  • patients with highly active relapsing remitting MS (RRMS) that has failed to respond to certain other treatment, and 
  • patients with rapidly evolving relapsing MS who cannot be treated with other medicines.

In addition, doctors must not give the medicine must to patients with liver injury.

It is not recommended for patients with autoimmune conditions other than MS. Medical professionals should be cautious when the give Zinbryta together with medicines that can damage the liver. Doctors are advised to monitor the liver function of patients to whom they give the medicine. They should closely watch patients for signs and symptoms of liver injury.

The EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) has issued these provisional recommendations as a precaution and to ensure that Zinbryta continues to be used as safely as possible while a review of its liver safety is ongoing.

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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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Missing Pieces: Missing too much to be meaningful

missing pieces

While I hate to decry any research connected to multiple sclerosis, I feel that this is one of those times. I cannot stay quiet.

A new report says 25% people with MS in the UK don’t know about treatments that may help delay disability. And that’s despite most of them saying disability is their big concern.

But, although the report talks about massive percentages backing up supposed `facts’, those figures gloss over a big problem. The size of the research sample is pathetic.

The MS Society estimates there are 107,000 people with MS in the UK, but the sample size was just 100. Absolutely ridiculous. Additionally, the researchers also surveyed 120 neurologists.

According to CheckMarket, a leading cloud-based survey software solution with more than 10,000 users in 150 countries, the sample size needed to be nearly 2,350.

Apparently, the report was funded by Sanofi Genzyme and conducted by Adelphi Research UK. It is titled The Missing Pieces though, as far as I can see, the main thing missing was a big enough sample.

Only 100 people gave their views, so any percentage given cannot be scaled up to purportedly represent the views of 107,000 people.

It is a great shame really, as the research results would be worth considering if the sample was large enough and was truly representative. But it was neither. Also, online questionnaires are not the best way to obtain a representative sample.

‘Missing Pieces’ misses target

The organizers claim that The Missing Pieces campaign aims to explore attitudes and behaviors around MS treatment in the UK, and to identify gaps in knowledge, understanding, conversations, and treatment/care plans.

Sad to say, because they didn’t plan well enough, their efforts have failed to reach that aim in any meaningful way.

Bearing in mind my warning that the views of 100 people are unlikely to be meaningful, here are its major findings:

  • Around three-quarters of healthcare practitioner think MS patients face delays in beginning DMTs. They blame poor access to neurologists with MS specialities. This is despite the fact that disability prevention is a key goal of the country’s National Health Service. An MS neurologist is needed to start a patient on such treatment
  • 45% of patients said their primary healthcare specialist was an MS nurse. And 20% reported turning most to general practitioners
  • Among all patients surveyed, 36% said they had not seen a neurologist in the past 12 months
  • 50% of patients said they discussed disability with a doctor or nurse at the time of diagnosis. Yet only 34% reported having continuous conversations on disability during subsequent visits
  • 69% of healthcare practitioners reported “routinely discussing” disability with patients around the time of diagnosis
  • Among patients, only 22% reported discussing treatment goals with a healthcare practitioner
  • 45% of patients said they were “scared” they would be disabled

Sanofi Genzyme is the specialty care unit of Sanofi. It markets Lemtrada (alemtuzumab), and Aubagio (teriflunomide), both for use by people with relapsing-remitting MS.

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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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MRI – Keeping calm and relaxed in the tunnel

MRI scanners and, in particular, how to cope with them, is somethi.ng t hat concerns many people as they prepare to be scanned.

mriGoing into the scanner’s tunnel can be intimidating in advance and frightening when inside. Never mind that it is open at both ends, the closeness of the tunnel can soon put your brain in overdrive. You can worry about the nearness of the tunnel and about getting out.

Anyone who, like me, has multiple sclerosis will have to cope with MRI scans, perhaps every few months. Does it get easier? For some, yes. But not for all.

People who experience claustrophobia might never get used to the enclosed MRI scanner but the good news is that there are now ‘open’ MRI machines that give the person being scanned a feeling of openness and can reduces stress. However, open scanners are not available everywhere,

My own experience has been limited to the more traditional closed scanners.

To see or not to see

Operators of these machines sometimes place a mirror so that the patient can see out of the tunnel. That may help alleviate the concerns of some but not all as they still see out via the tunnel. Others may prefer to close their eyes and practice relaxation techniques to help keep themselves calm and peaceful.

The Maximov centre in Moscow.

My most recent MRI scan took place almost nine months ago during a short stay at the AA Maximov centre that provides haematopoietic (hematopoietic = American spelling) stem cell transplantation (HSCT) in Moscow.

There, I felt totally at ease when I was slid into the tunnel. As there was no mirror, instead of looking at the tunnel’s ‘ceiling’ only a few inches away I chose to close my eyes and ignore what was going on around me.

Now MRIs are not the quietest machines in the world, as anyone who has been scanned, can tell you. But my relaxation was so effective that I fell asleep. I tuned out the noises of the scanner, drifted off to sleep only to wake myself up by snoring. And not just once.

MRI noise

Why are MRI scanners so noisy?  The California Institute of Technology explains: “An MRI is noisy because its magnetic field is created by running electrical current through a coiled wire—an electromagnet. When the current is switched on, there is an outward force all along the coil. And because the magnetic field is so strong, the force on the coil is very large.

“When the current is switched on, the force on the coil goes from zero to huge in just milliseconds, causing the coil to expand slightly, which makes a loud “click.” When the MRI is making an image, the current is switched on and off rapidly. The result is a rapid-fire clicking noise, which is amplified by the enclosed space in which the patient lies.”

Somehow, despite all that noise, I managed to enter the world of dreams three times during more than an hour in the machine. It seems I was relaxed.

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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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European Medicines Agency recommends licence for cladribine (Mavenclad)

cladribine

The European Medicines Agency has approved cladribine (brand name Mavenclad) for use with multiple sclerosis.

The agency has recommended that a licence should be granted, by the European Commission, for the treatment of highly-active relapsing MS. Cladribine is currently an anti-cancer drug under the brand names Leustat and Litak.

The next step in the process is for the European Commission to grant a licence.

As far as the UK is concerned, Cladribine will also have to be appraised by National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC). These organisations decide whether the drug will be available through the National Health Service.

NICE has already started the appraisal process in anticipation of a European licence being granted. NICE could publish its decision in February 2018. If NICE approves the use of cladribine, it could be available on the NHS as early as June next year.

The medication’s development has met mixed fortunes. Russia and Australia both approved it as an MS treatment in 2010 but Europe and the United States turned it down because of safety concerns.

In 2011, a licence application was refused because of concerns about a higher risk of cancer in people taking cladribine. However, in July last year, Merck announced that further research had found that there is no such increased risk and that the EMA had accepted a new licence application.

How to take cladribine

Patients take cladribine as a pill in two treatment courses:

  • In the first course, a patient takes cladribine pills for five consecutive days in the first month and for five consecutive days in the second month
  • The second course is taken 12 months later. Again a patient takes cladribine pills for five consecutive days in the first month and for five consecutive days in the second month

Cladribine was found to reduce the risk of relapses by 58%, compared to placebo, in large clinical trials. Also, it reduces the risk of increased disability.

Clinical trials reported main side effects include reduced white blood cell counts, which in most cases was mild or moderate, and infections including herpes zoster (shingles).

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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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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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