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.  

 

 

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.

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/!