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
Gene research run by Dr Richard Spritz of the University of Colorado and Professor Dorothy Bennett of St George’s hospital, London
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:
More cellular research on where the source of vitiligo and psoriasis are located in skin 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
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 email@example.com. 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.
What’s new ?
Take care of your eyes!
A small study has found that people with vitiligo may also be more prone to problems with their eyes, specifically with a condition called ‘dry eye’. You may have seen information about this recently in the press because Jennifer Aniston has been talking about it. Read more about the study here.
And see Jennifer talk about her dry eye condition and how she treated it here.
What we’re doing next…
Next week we are going to meet with Lachlan Hay, Head of Global Network and Communications at Clinuvel AG.
Clinuvel are progressing to trials in America of its drug, Scenesse, which has shown very promising results as a combined therapy with phototherapy to treat and restore pigment to patients with vitiligo.
I will report more when I’ve met with him, but for the time being you can hear more about the US trials, and if you live in the US your chance to participate, on this podcast
We’re also meeting with the Samaritans in the second week of September. We wanted to talk to them about how they run their e-mail helpline, and whilst this is in fact run by a third party and not volunteers, they said that they would ” be happy to meet you and provide you with some thoughts based on our current service – nothing in heavy detail, but I think it’s good to share information and experience, and to build relationships within the sector.” It’s nice when people are open to exploring ways in which they can help you!
It would be good to feel that we are taking a first step towards providing a real service to people with vitiligo – many people cope with their vitiligo without a second thought, but there are also many of us who have a crisis in confidence – before a big social event, when meeting a lot of new people, going on holiday when you’re going to be in a swimsuit, going for job interviews!
There are a lot of “how to” or “self-help” guides out there, for example produced by Changing Faces or on the British Association of Dermatologists’ psycho-dermatology website, but they are all for you to read and then to action yourself, and there appears to be a gap in the market to offer online help by email to people with vitiligo when going through those crisis points.
The two websites we’ve referred to above can be found through the links below:
We’ve been confirmed as the patient representative to help do a review and rewrite of the Patient Information Leaflet for vitiligo produced by the British Association of Dermatology – it looks like the Vitamin D advice needs to change in line with the government’s advice on supplements for everyone recently released. Take a look at the current version of the PIL here.
We gained our third trustee and signed off and submitted our application for charity status. We have no money, but don’t want to follow a familiar model in our sector of charging a large amount for membership, and then using that money for things that don’t directly benefit people with vitiligo. We’d rather have no membership but a group of people working together for the things that really matter to people with our skin condition. We will keep you updated on how we get on!
Going to see your GP
We thought it might be useful, ahead of the development of our app, to go through some questions you might want to ask – of both yourself and your doctor – before you go to see a GP about your vitiligo, and when you are there. Remember that most GPs have only done a small amount of dermatology training in their
If you are not yet diagnosed, before your GP appointment, ask yourself:
Is the appearance of your white patches something recent (in the last 3-6 months)?
Patches that have developed recently are easier to treat than older patches
You can still however seek treatment for older patches, and access other services to help you with your skin condition, and its impact on you
Does any other family member have vitiligo?
If yes, you are more likely to have developed vitiligo too
If no, your doctor may explore other options for the cause of your patches with you first
3. Do the patches burn in the sun and not/never develop a tan?
If yes, you are more likely to have vitiligo
If the patches re-pigment – that is, get a tan again – this is unlikely to be vitiligo, and may be a fungal skin disease that will clear up with treatment
Are the patches symmetrical?
If yes, it is likely to be the most common kind of vitiligo called non-segmental vitiligo
If no, it may still be vitiligo, but a different type, called segmental
Does your vitiligo upset you or cause you concern?
The disease can be very upsetting because of the changes it makes to your appearance, and you should seek help if it has a significant impact on you
You can seek both talking and online therapies via your GP
Online support groups for vitiligo also exist – check out ours at https://www.facebook.com/groups/VitiligoSupportUK/
At Your GP
Questions to ask
After the diagnosis is confirmed:
1. Do you want to have treatment?:
Ask if you can please be referred to a consultant dermatologist
Like most NHS services, dermatology is under pressure and your GP may think that other skin diseases should be prioritised over you
You should not be responsible however for rationing NHS services. It is therefore important that you explain that you would like to receive phototherapy, and that you understand that if the disease is treated early in its progression there is a very good chance of getting your pigment (skin colour) back again. Treatment using Narrow-Band UVB is a good option for regaining pigmentation
The study that supports this is a report by A. Sasase, C Hihiro Honda and K Hayashibe Of the Shibata Clinic of Dermatology, Osaka at The XXIst International Pigment Cell & Melanoma Conference, 2011
Your GP may want you to try a topical steroid or calcinuerin inhibitor first. You can try these but make sure you give them a set amount of time to work (three months) and then return to ask if you can now be referred to a consultant dermatologist. Topical creams are not as successful in treating vitiligo as NB-UVB
Light treatment is usually only done in the NHS, so it is not helpful to get a private referral to see a dermatologist
2. Do you need sunscreen for your patches?:
You can ask your GP to prescribe you sunscreen
There are three types of sunscreen available for people with vitiligo, and they are available as a drug rather than an optional item.
The wording of the British National Formulary makes it clear that because people with vitiligo are ‘photo-sensitive’ they are entitled to receive sunscreen on prescription
The three types available are Uvistat Factor 50; L’Oreal Ant’helios Factor 50 and Sunsense Factor 50
The Sunsense product comes in a 500ml pump
3. Do you have any symptoms of thyroid disease?:
Research shows that people with vitiligo have a 2.5x higher risk of thyroid disease than the general population
Ask your GP about your risk of the disease and if you need a blood test
4. Do you need psychological support?:
It is very common to feel unhappy about your patches, and their erratic progress across your skin
If you think it would be helpful to talk to someone about your feelings and get some help, ask your GP to be referred for counselling, or access online counselling via this link.
You will find more online resources to help you manage your feelings or anxiety about the condition in our “Treatments” section of this website
There are also a number of support groups on Facebook that can help you with your feelings about your vitiligo, including ours!
We started this charity nearly two months ago. Most people we knew from our role at our previous organisation have been amazingly generous in wishing us well (apart from the actual previous organisation, that is…).
We’ve started to grow a following on Twitter, written four newsletters and made a beginning in having a group on Facebook. We’ve, most importantly, designed and got in stock some ‘talisman’ cards for people with vitiligo.
However many meetings I go to, or lovely people who include me in projects, or people who treat you as if you are normal, there is still the inescapable fact that I have vitiligo – all over my face, hands, arms, feet and legs! When you go out and about, you do so in the knowledge that lots of people will take a second look at you, and either give you that pitying smile (mostly middle-aged ladies) or scornful sneer (young beautiful women, mostly guilty of this).
In the long term, we would like to develop the charity so that we can provide an email counselling/helpline for people with vitiligo.
In the short term, these talisman cards might help you with your confidence.
They are definitively not designed to make you challenge and verbally attack people who stare! I was accused of this by someone in the past and I want to be clear about it now.
They are designed to have in your wallet, purse or pocket. You can keep them there, to give you a quiet confidence, or you can use them to start a conversation with someone and tell them something about your skin condition.
Carry them around with you, and know that we have your back.
Know that we are an organisation that understands how you’re feeling when those kids turn around in their tracks to watch you go past.
Know that we understand what it’s like when the person opposite you on the train surreptitiously takes a photo of you on their phone.
Know that we understand that you have days when you feel like just staying in and not going through the stares.
We understand that you might want to camouflage some days but other days you just want to have your natural skin out.
We understand that you don’t necessarily want someone to say “Oh your skin has got worse” or “The vitiligo on your face has grown a lot” or “Your vitiligo is a lot worse than mine” because we’ve had all those comments, and more, from people who should know better. These cards say, we’re standing by your side and we know what you’re going through. That’s why we’re here.
And have a great week ahead of you! Stay safe in the sun if there is any where you are, and check back soon for our next newsletter.
Follow us on Twitter: @VitiligoUK
Join us on Facebook: https://www.facebook.com/groups/VitiligoSupportUK/