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.

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.  

 

 

Staying Safe in the Sun: sunscreens on prescription

sunshine-300

If you are in England and Wales, you may not know that you can get sunscreens on prescription from your GP.

You may have read the Daily Mail’s rant about people doing just that, and been put off?

But here’s the deal if you have vitiligo.

doctor
When you go to see your GP, and have vitiligo extensively, for example on your hands, feet and face, you are entitled to ask for one from a small range of sunscreens to be prescribed for you.

The information on this can easily be found in the British National Formulary, which is the prescribing bible for GPs.  It is currently in Section 13.8.1.

The Daily Mail is right, usually sunscreens are what is called a “Borderline substance”, leaving it to the discretion of each doctor to see if there’s a case for prescribing.

EXCEPT! they “are regarded as drugs when prescribed for skin protection against ultraviolet radiation in abnormal cutaneous photosensitivity resulting from genetic disorders or photodermatoses, including vitiligo ..“` That’s my highlighting, but vitiligo is definitely first on the list.

This means that the Advisory Committee on Borderline Substances has given authority for doctors to prescribe. 

Please ask your GP politely but do be assured that you can get sunscreen.  

They may need to write ‘ACBS’ on the prescription to indicate that there’s approval to prescribe.

The recommendation is for all sunscreens to be 30SPF or over.

Here’s the ones you can get (pictures are illustration only and you may get a different product on prescription):

Anthelios® (L’Oréal Active) for example:

sunscreen loreal

 

Sunsense® Ultra (Crawford), for example:

The 500ml pump has been available and is an economical option if you pay for prescriptions.  

You can get small bottles to decant it into in Boots, and then carry some around in your bag or briefcase or pocket.Uvistat® (LPC)

sunsense 50

Uvistat® (LPC), for example:

uvistat

The full advice from the British National Formulary can be found here

Overall the best advice is to:shade

Stay in the shade as much as possible

 

five-to-three-round-clock-face-red-38901750Avoid the sun between 11 and 3

 

 

Wear clothes that protect your skin My-Family-Wears-Sun-protective-Clothing

 

Stay safe in the sun, protect your vitiligo, and good luck at the doctors’ getting the sunscreen that you both need and are entitled to!  Let us know how you get on

 

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