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 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.
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