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

2017 Bulletin One

The February Bulletin!

Face Equality Day 2017 is coming soon!

We went to a great meeting on 15 February at the offices of Changing Faces, where we met up with Henrietta Spalding, their Head of Advocacy, and representatives from Lupus UK, CLAPA, SkinMatters 2017, the Katie Piper Foundation and the Birthmark Support Group.  

It was a meeting to be briefed on their plans for the first ever Face Equality Day on May 26 2017 – we are really pleased to be invited to support this, and will be getting more information to you as it becomes available.  It’s a day to put in your diary to show support for everyone with a visible difference, even if you are able to conceal your affected skin under clothing, there are many, young and old, who are really affected by vitiligo’s presence on their faces and hands.  This story confirms that it has an impact even though it’s an amazingly positive story overall, it has clearly caused some moments’ thought to Dean

More information about Face Equality Day is available here

Gene research run by Dr Richard Spritz of the University of Colorado and Professor Dorothy Bennett of St George’s hospital, London


Genes

Dr Spritz has been researching the genetic basis of developing vitiligo for over twenty years.  In Ocotber 2016 Dr Spritz reported the results of the third study, which compared those affected by vitiligo with a control group, and involved a number of European participants.

The results allowed the team to identify twenty three locations on the human genome that are newly linked to susceptibility for vitiligo.

  When added to the two previous studies this meant a leap forward in understanding the disease, how it originates and has the potential to allow new and more targeted treatments to be developed.

A very interesting interview between Dr John Harris, another champion of vitiligo research and the treatment of patients at the University of Massachusetts Medical School, and Dr Spritz can be found here.  

This is an enormous piece of work, taking over twenty years to complete, and with huge implications for people with vitiligo.  As Dr Spritz says in the interview, understanding properly what causes vitiligo would allow targeted treatments to be devised, and may even allow the medical profession to identify who is at risk of the disease and how to prevent it beginning its inexorable progress in those identified individuals.

It is also interesting to see the identification of vitiligo alongside other auto-immune disorders, and amongst others Dr Spritz mentions Addison’s Disease, autoimmune thyroid disease, Type 1 diabetes, pernicious anaemia and systemic lupus erythematous.  We were lucky to meet a representative from the Patient Support charity Lupus UK, and are pleased to share their weblink here, so you can gain more information on this condition: LUPUS UK

Patient Support and Information for the other diseases we mention above can be found as follows:

ADDISON’S DISEASE

THYROID DISEASE

DIABETES

PERNICIOUS ANAEMIA

Interview between Dr Harris and Dr Spritz

More cellular research on where the source of vitiligo and psoriasis are located in skin cells

cells

This complex piece of research undertaken in Sweden (full references are contained in the article itself) looked at where skin disease activity originates.  It looked specifically at the role of cells called tissue-resident memory T (Trm) cells.  These are contained within the skin and provide localised (at the source of the infection) protection against pathogens, such as viruses or bacteria, or, in the case of vitiligo, auto-immune attacks on the melanocytes in the skin.  

The research showed that human skin contained Trm cells that performed differently in response to different stimuli.  Vitiligo cells responded to inflammatory cytokines (substances produced by the immune system – hence the concept of auto-immune diseases) by accumulating ‘activated, perforin- and granzyme-expressing CD49a+ Trm cells’.  

This is a complex article and hard to understand as a layperson but their closing comments may bring some hope (for the long term) to those of us with the disease : “Further insights into the dynamics of the composition, retention, and activation of expanded, functionally specialized Trm cell populations might contribute to improved management of both infections and chronic inflammatory skin diseases.”

Sun Screen, Fake Tan and the Summer Months

selftan

It’s only February but if you’re anxious about exposing your patchy skin it feels like summer is just around the corner.

First of all, don’t forget that if you have vitiligo, defined as a light-sensitive condition, you are entitled to get sunscreen on prescription, as a drug and not as a borderline substance (with which there have been issues in the past).  There are three brands available on prescription, which are Uvistat, L’Oreal Ant’helios and Sunsense.  All are factor fifty, and based on a mineral sunscreen, usually titanium dioxide.

There is a letter available on our Facebook group and attached here GP letter sunscreen 2017 that you can print out and take to your GP to gain support for your request for a prescription.  If you pay for prescriptions then it may be more economical to buy them yourself, for example from Amazon.  

You can buy Altruist there, for a reasonable price, and which also donates to Under The Sun, a charity providing help and support to children with albinism in Africa.  Other sunscreens are also available, and the decision on what product suits you should be made with care for your skin.  

Whatever sunscreen you purchase needs to:

Have at least four stars UV protection,

Not be less than factor thirty SPF,

Be put on thickly, fifteen to twenty minutes before you leave the house and

Be frequently re-applied when in the sun and after swimming.  

The British Association of Dermatologists contributed to the article attached here, which advises on sunscreen generally.  As you will see in the interview with Dr Spritz above, there is a protective effect in the genes of people with vitiligo against developing melanoma, however this isn’t fully understood so isn’t a licence to burn your skin, and there are other types of skin cancer which you are still at risk of developing.  

 

When it comes to fake tans, it took me a while to understand why I couldn’t get fake tans to work on my skin.  Whilst I was at another charity they undertook a study into skin stains and their effectiveness but they won’t tell you the results by named product which renders it….not terribly useful to the desperate vitiligo sufferer who wants a product to tone down some of the contrast on their patches!

However the general principles of a fake tan are that the product works on the interaction of a chemical called DHA with dead skin cells on the surface of your skin to produce melanoidins.   This diagram shows you the science behind it (apologies if you’re all scienced out by now!)  Chemistry-of-Fake-Tan-2015

So it may be that you just can’t produce those melanoidins in the reaction part of the process?  Or that some areas of your skin can and others can’t, so that you get a patchy result.  If you’re like me, and find fake tans just don’t ‘take’ on your skin, an alternative nay be an instant tan, a product that stains your skin in the short term and washes off within twenty four hours or longer.  

Two examples are the St Tropez product Instant Tan and Garnier No Streaks Bronzer Instant Shimmer but we are not making a recommendation of either product, and other products are available that may suit you better.  Whatever you choose, do practice before you go away on holiday, and whilst you can still wear your results under clothes in case it doesn’t go quite as smoothly as you planned!  Many people recommend a mitten to apply the product (a special one for fake tans, not a woolly one!) and most articles on this subject recommend that you exfoliate and moisturise around twenty four hours before you start the process.

Finally, whilst you are still able to wear long sleeves and jeans, make sure that your skin is well-moisturised for the summer.  Find a moisturiser you can afford to put on every day, when you get dressed or before you get into bed, and keep it out where you can see it and remind yourself to put it on.  There are lots on the market but a thicker consistency may produce better results.  It’s worth repeating the government’s warning about the use of aqueous cream as a moisturiser which can be found here.

Talking to you and sharing experiences

We’d love to hear from you and to share your experience of vitiligo with others. We have a standard interview format of around fifteen questions and the opportunity to share your tips about dealing with vitiligo, from sunscreens that have worked well to handling stares and comments, we welcome your participation.  If you’d like to be interviewed for our next newsletter, contact us at info@vitiligosupport.org.uk.  We hope to hear from you!  

Wishing you the very best with your skin over the next few weeks until our next newsletter is out – thanks for your support of the charity and everyone with vitiligo.