Friday Facts

We’ve been running our Friday Facts feature about different aspects of vitiligo on our Facebook group and this is the latest post about research.

Friday Facts:

What research should I trust?

Whilst vitiligo doesn’t yet have a cure, there are certainly a number of studies taking place every year looking at different aspects of our condition, and its treatment.

Research into vitiligo falls roughly into three areas: what causes vitiligo; what treatments slow or stop the vitiligo and what treatments stimulate re-pigmentation.

For example, this year the HI-Light trial will report on its findings on a particular treatment for vitiligo.  This UK study, that some of you may have taken part in, was looking at treatment with a hand-held UVB device, alongside use of a cream to enhance the effects of the UVB.  Part of the trial’s interest to vitiligo patients in the UK would be to see results that meant the NHS developed a programme whereby we could have these hand-held devices at home for treatment of small patches, say on the hands or face, meaning less time taken up with treatment away from work, school or university or home life.   

The trial was a randomised, controlled trial, and if you are looking at a piece of research and seeing if you should trust the results, perhaps to make a decision about your treatment or making a lifestyle change, this is what you should be looking for.

What does Randomised and Controlled mean?

  • Randomised or Random Allocation

This means that if you volunteered to take part in a study, you would be randomly assigned to a different group within the trial, and not be told what group you were in.  

It means a study in which a number of similar people (say all with stable, non-segmental vitiligo) are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention, without taking any similarities or differences between all the people volunteering into account.  This randomisation means that each individual has the same chance of having each intervention.

There might be three groups in the trial, which would comprise, for example, those receiving the active treatment, those receiving an inactive treatment or a placebo and a comparison treatment.  The researchers wouldn’t therefore choose to put all the people with vitiligo on their face into the active treatment group, because they believed that that group would respond better to the active treatment, but the volunteers would be assigned into a group that was chosen for them by, perhaps, a computer-generated random sequence.

The groups are followed up to see how effective the experimental intervention was. Follow up in vitiligo trials tends to look and see how long the re-pigmentation lasts.

The results are then measured at specific intervals (in the HI-Light trial this was at three, six and nine months.

This method is also used to reduce bias.  So, for example, vitiligo researchers might be pre-disposed to believe that facial vitiligo would respond better to treatment and look for that result being replicated in their trial.

  • Numbers

A study should have at least twenty people in it for the results to be trustworthy – otherwise the risk is that the treatment effects that you see are random chance. 

You will very often see people saying that they tried different things which they claim cured their vitiligo or caused them to re-pigment.  You are very welcome to try anything that gives you some feeling of hope or control over your vitiligo however one person’s claims does not make a reliable result.  

Reliability

This refers to the ability to get the same or similar result each time a study is repeated with a different population or group.  This is assessed by complex statistical calculations. 

  • Published Research

Research results are published in medical or scientific journals where they are peer-reviewed and subjected to comments and questions. If someone says they have a product that treats vitiligo effectively and they’ve never published their study, that raises questions about the effectiveness of the research, or that they are trying to keep the results from the public or other scientists because the results didn’t support their theory.  The process of designing and carrying out a randomised controlled trial is very rigorous in the UK and subject to many regulations, and ethical considerations. 

  • Longitudinal studies 

When looking at the effect of something like diet on your vitiligo, what’s called a longitudinal study is used. These are very difficult to maintain because you are asking people first to control strictly an aspect of their daily life, for example excluding or including something in their diet, secondly to be consistent about that over a long period and finally, to be completely honest about it!

  • Anecdotal evidence 

If one or two people say that they have cured or effectively treated their vitiligo with some (unusual or otherwise) treatment this is just someone’s account of what happened to them and may well not be true of a group of people who then follow the same treatment.  There is no proof that this treatment works beyond one person’s anecdote, and no control of other variables in their life.  For example, someone may say that they started taking a supplement in May one year, and saw pigment patches coming back on their face.  This may actually relate to them starting to walk to work again after the winter, and getting incidental sun exposure, rather than the supplement itself, but we have no control of those variables so cannot tell.

Because vitiligo can be so distressing, we all respond with interest to news about new trials, or to people’s claims.  It is better to wait for a properly conducted trial to be done before you make any changes to treatment, and to follow reputable clinical resources to ensure the information you use is the best possible.

One of the best sources of information is the Cochrane Review, which does all the work for you in analysis of information from trials and tells you what shows a positive effect. It can be found here:
https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

  • Should I take part in research trials?

Yes, please do!  The more of us willing to take part, if we are eligible, means the more likely that meaningful results will be found for us all.  

https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

News from the frontline

Happy New Year!

First of all, a very Happy New Year to you all.  Let’s hope that 2017 isn’t quite as turbulent as 2016 and that we all survive to the end!  We had some good times and some bad in 2016, like most people, but most excitingly we gained registration as a charity with the Charity Commission of England & Wales, which we hope will allow us to go on building those strong relationships with other charities, organisations and individuals who support all of us with vitiligo. 

We had officially designated January as the year’s suckiest month, but then lots of things started happening!  We’d like to share them with you, because they really require your participation and we hope that you will be encouraged by how much work is going on out there to support those of us with a visible difference.  Also we hope to meet some of you in March at the SkinMatters conference detailed below.

Have a great January, only 26 more days until February, or less if you’re reading this later in the month, how great is that!

1. Changing Faces

First of all, this amazing charity has provided support to everyone with a visible difference for twenty five years this year.  Happy Birthday to them!  They are in the course of gathering evidence about how your skin disease or condition impacts on how you live your life, via a very important survey.  Please would you help them by completing it?  It’s a very important gathering of evidence. to allow them to lobby on our behalf to make changes to how people with a visible difference get treated in the workplace, in the healthcare setting and in daily life.

The link can be found here and the closing date is 28 February:

 2.The University of Sheffield

The University of Sheffield has more friends of vitiligo, in particular in its psychology department, where we’ve been given particular support by Dr Andrew Thompson both in the past and present.  They have a study they’re doing in online self-help and would like your participation.   Here’s their advert for the study:

We would like to find out whether a self-help intervention is effective for adults with a visible skin difference. The self-help intervention aims to help people build their confidence in social situations.

This study is being conducted by researchers from the Department of Psychology at the University of Sheffield. If your confidence in social situations is affected by your visible skin difference and you are aged 18 or over and interested in taking part, please click on the link below. This will take you to the study website, where you can read more information.

The University of Sheffield- study website

If eligible, you can choose to take part, and will be asked to complete a set of questionnaires. These will be repeated once during the course of the study, to see whether the self-help is effective. You will receive the self-help intervention as a PDF document either straight away or after a waiting period. If you know someone else who might be interested in taking part, please feel free to forward this link.

3. SkinMatters

This organisation is planning a fantastic conference taking place in London on 25 March, and using as speakers some people we’ve worked with in the past, including Professor Chris Bridgett, Kerry Montgomery, Barbara Page and Dr Alia Ahmed.  It’s an all-day event, with excellent speakers, and including lunch & refreshments costs £32.  We are very excited to be involved in the patient support element of the day.  Please come along and learn more about managing your skin.

The link for booking can be found here:

Skin Matters

Newsletter Mid-August II – Bits and Pieces!

paint

 

BB1-bits-and-pieces

 

Research news!

If you’ve not picked it up via our home screen, the Hi-Light trial is still recruiting participants, via a hospital that may well be near you.  This trial is investigating the effectiveness of home-based treatment for vitiligo, and needs your support.  Take a look at their link that’s right here, to see how to sign up.

And if you don’t already know about it, the NHS has a web page that has a list of current vitiligo studies going on.  It’s worth checking it out every month to see if there’s any research programme going on that you can take part in.  Currently it’s only showing the Hi-Light trial in the UK, but others may become open to participants over the next twelve months.  The site and search engine can be found here.

Sunscreen!

sun15

In case you missed the stories on Twitter and here!, you can now buy a sunscreen on Amazon that was created by Dr. Andrew Birnie, consultant dermatologist and dermatological surgeon, who specialises in skin cancer.  We’ve tried it, and it’s great, easy to rub in and a soft texture.  We’ve also used it on our face, and it doesn’t sting the eyes or leave a greasy residue.  

You can read more about it on their Facebook page, and also buy it online at Amazon.  We think that it’s a really good price for a very high quality, high UVA rated sun screen – see their Amazon details here.  Don’t forget that you can buy a litre bottle as well!

Overall the advice for those with extensive vitiligo is to keep out of the direct sun, especially between 11 and 3, and to use a good quality sunscreen, hats, sunglasses, shade and clothing to protect those vulnerable patches.

If you’re looking for a really good value sunscreen, check out this article from Money Saving Expert about deals on sunscreen.  Please do check though that it’s 30SPF or over, and that it’s UVA/UVB rating are high – there’s more explanation in the online article here.

You also need to take care, not only in a soft-top car, but also of sunlight coming in your car windows.  A study was done in Los Angeles that found that the UVB protection in the front windscreen was consistently high, but the protection offered by the side windows was much more variable.  The study details are here. 

We also found information from Cancer Research UK, that advises us to wear sun protection as, whilst your car may protect you from the sunburn and redness from UVB rays, it doesn’t give you as much protection from UVA rays, which can also cause skin damage.  Read more about it here. 

softtop

You can buy film to cover the windows with and gain better UVA protection, but the recommendation appears to be that it’s best fitted by an expert.  This article may give you more advice.

 

Nutrition

nutrition4

We hope that you’ve had a chance to read the page on nutrition by now!  We noticed on the Vitiligo Society Facebook page someone recommending that a vitiligo sufferer took turmeric.  We wanted to repeat the advice on turmeric that we have on our page, which is that a small study showed that eating turmeric both advanced patches and also impeded progress of treatment.  The link to the study can be found here.  It is a very small study, but it’s worth trying taking it out of your diet, as it’s not a main nutrient source so not dangerous to cut out.

whipsaw

We also found news in the New York Times about what the writer calls ‘the whipsaw effect’, when one week you are told something is good for you, only the next week it becomes a lethal substance to be avoided at all costs.  It highlights the difficulties in pursuing research in dietary areas, and makes for an interesting read.  

Don’t forget the advice on vitamin B contained on our nutrition page, and check out this round up from the Dermatology Journals which confirms that a small study showed that B3 may have a protective effect against skin cancers.

Yoga

yoga1

If you have a chronic disease (or four!) you’ll know the really important need for mental wellbeing and balance, alongside trying to treat or manage your physical ailments.  

One of our Medical Advisory Board members, Dr Mahto, is a keen practitioner of yoga, so we found some introductory sources for us all to try.  

It doesn’t have to be hot and sweaty, or a class full of skinny, competitive women, it can be a peaceful way to stretch and reconnect with your body.  And we all need that, if we have vitiligo.

We were interested to read The Guardian’s analysis of all the different types of yoga out there.  The writer also runs classes in the Kings Cross area of London.

Then we were recommended to take a look at Yoga with Adriene, who has a YouTube channel and also posts on Twitter here.

Finally if you go to a gym, check out their classes and see if you can try out a beginner’s class free.  

 

 

Newsletter Mid-August 2016 I

WELCOME TO VITILIGO SUPPORT!

We’ve put together our first newsletter and want to welcome all our new Twitter followers – over 140 in just seven days, thank you, and those lovely friends who’ve joined us in the Facebook group!

welcome

This newsletter covers:

Some important Vitiligo research news

Sleep!

Feeling good about yourself and

Camouflage or not – a tricky question

SOME IMPORTANT VITILIGO NEWS

news

1.A Research Update:

A piece of research was reported by the British Association of Dermatologists on Twitter this week.  The research expanded on some work previously done on vitiligo in mice.

This identified the importance of CXCL10 (more information on this in Wikipedia) in the progression and maintenance of depigmentation in mice.

This study, undertaken on a group of 80 patients with vitiligo, and a control group of 40 people who did not have vitiligo, showed that  serum CXCL9 and CXCL10 were significantly elevated in patients with vitiligo and were higher in patients in progressive stages than in stable stages,

The CXCL10/CXCR3 axis mediates T-cell recruitment into the skin in progressive vitiligo.

Blocking this chemotactic mechanism (the movement of an organism in response to a chemical) may present a new form of therapy. Serum CXCL10 may be a novel biomarker in monitoring disease activity and guiding treatment of progressive vitiligo.  

T-cells are a type of white blood cell and play a central role in cell-mediated immunity or the immune reaction of cells to an external “threat”, whether from bacteria, virus or cancer.  

So the researchers are hopeful in being able to identify when vitiligo is progressing and to guide where treatment should be targeted, and maybe in the long term to produce a type of treatment that works on this ‘chemotactic mechanism”.

The study can be found under the following reference:

Wang, X. X., Wang, Q. Q., Wu, J. Q., Jiang, M., Chen, L., Zhang, C. F. and Xiang, L. H. (2016), Increased expression of CXCR3 and its ligands in patients with vitiligo and CXCL10 as a potential clinical marker for vitiligo. Br J Dermatol, 174: 1318–1326. doi:10.1111/bjd.14416

2. Vitiligo patients and Hypo- and Hyper-thyroidism

The recent newsletter from Vitiligo Support International (no relation!) carried an article on the link between vitiligo and either an over- or under-active thyroid.   Their Summer Newsletter can be found here.

Here are their important recommendations, taken from research studies undertaken over the last eleven years in the area of vitiligo and its correlation with thyroid disease.

If you are concerned that you or your relative with vitiligo shows any of the symptoms shown in the article, please see a health professional.

Taken from the Summer Newsletter for the Vitiligo Support International charity in the USA

Research, Facts, and Recommendations

The risk for those with vitiligo of developing Auto Immune Thyroid Dysfunction (AITD) disease has been found
to be 2.5 times higher than in the normal population.

The risk of developing elevated thyroid antibodies has been found
to be greater than 5 times higher than in the normal population.

It’s possible that “thyroid autoimmunity might play an important role
in triggering and maintaining the depigmentation process of vitiligo.”

Source: 2015 review of vitiligo and thyroid diseases conducted in Florence, Italy
Review recommendation: Vitiligo patients should be screened for AITD

The following symptoms may indicate an increased probability of developing AITD:
Higher body surface area of involvement (widespread vitiligo)
Experienced stress as an onset factor
Family history of AITD
Duration of disease: The risk of developing AITD doubles every 5 years after a vitiligo diagnosis.
Source: 2013 Belgian study of 700, and French study of 626 of non-segmental vitiligo (NSV) patients
Recommendations from both groups: NSV patients with any of these symptoms
should be regularly monitored for thyroid function and thyroid antibodies.

There is an increased incidence of AITD among pediatric and adolescent vitiligo patients

Source: 2013 study performed in the Netherlands on 260 pediatric and adolescent vitiligo patients
Study Recommendation: Screen for thyroid function and antibody levels
in all pediatric patients with non-segmental vitiligo.

 

SLEEP

Across the world it’s been hot and sticky, making it harder to sleep.  Whilst we can’t help you cool down enough to sleep well, we’ve found some great things to help you get off to sleep.

The first is this amazing podcast.  It’s called the “Sleep with me” podcast.  

You do have to get past the first few minutes which are usually an appeal for funding to keep the podcast going, and then…well, to be honest, I’ve never managed to stay awake longer than about four minutes, so I really have no idea how the podcasts end.  It’s his voice.

I appreciate that if you’re sleeping with someone else, they may not want to join in listening and he also recommends these speakers, which I haven’t tried, but might be worth a go!

http://www.sleepwithmepodcast.com

The pillow speaker 

You might also find this song, by Marconi Union, to be, as a study has recently determined, the most relaxing song ever.

https://www.youtube.com/watch?v=3RI3yU–Gw0

And finally, Harvard Health published some useful tips on beating anxiety to get a better night’s sleep – these can be read here.

 

FEELING GOOD ABOUT YOURSELF

We hope soon to have an interview with the lovely Kristen who is a health and fitness manger for a national chain of health clubs, and who also has vitiligo.  He talked to me on the phone about it bothering him when he was a child, at school, but when he took up weights and getting physically stronger and fitter, the degree to which it bothered him grew much less.  He felt confident in his own skin, because he knew that objectively that he was strong and that he could be resilient.

A study recently published showed that his subjective experience was right.  If a group of women were asked to focus on their body’s functionality – the things it could do – they were later had greater body satisfaction than the control group who just thought about a neutral task.  The researchers thought that this intervention “could be a beneficial individual-level technique that women can use to protect and promote a positive body image in the face of thin-ideal images.”

 

Keep thinking of all the amazing things your body can do, and not just about vitiligo!

TO CAMOUFLAGE OR NOT?

Ever since a really bruising experience talking about camouflage at a conference, and putting forward the apparently controversial idea that I would like money to go into psychodermatology as well as us concealing ourselves from others, I’ve tried to keep out of the debate.  Sadly, since that time, there are no more psychodermatology clinics in the UK available to coach, encourage, and help those of us with disfiguring skin conditions.  

Then, on Twitter, I discovered these stories.  The first comes from Rachel Anderson, a lovely American lady, who puts the debate on covering or not covering up so much better than I did at that conference.  She is on Twitter as @Beautymarked22 and has a website at http://www.beautifullymarked.com/category/about-me/

She wrote this awesome blog post which you can read for yourself here.  As she says, make your own decision and feel comfortable about it.  Even if there are days when you’d like to cover everything up!

I also really like this manifesto from the very lovely Erika at the gorgeous site, LivingDappled.com all about vitiligo and a positive message for us all.

This is fab!

So have an amazing week, hope that you stay safe in the sun and enjoy the summer.  We look forward to you joining us on Twitter @VitiligoUK and on Facebook https://www.facebook.com/groups/VitiligoSupportUK/!