Welcome to
The Vitiligo Society

Through community we support, inspire and educate on vitiligo

What is vitiligo?

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Have you been diagnosed with vitiligo? or are you just intestered to understand more about the skin condition.

How to treat vitiligo

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Although there is currently no cure for vitiligo, there are a number of treatments that may work for you.

Ways to cover-up vitiligo

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Self accepantance and pride is key to coping with vitiligo but if you prefer to cover-up, there are many great options.

Our impact

With your support, we:

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Kaiden Williams: Child star of Primark

Unless you avoid watching the news, reading newspapers or browsing in one of the UK’s biggest retailers, Primark, chances are you would have missed all the excitement around 13 year old Kaiden Williams. However, given his recent exposure across the media and social media as the face of Primark, my guess is you would have come across him somewhere!

In December last year, Primark unveiled a new kidswear campaign that featured Kaiden, who prominently has the skin condition on various parts of his body, most notably his face. The little sensation who could be seen across multiple stores, was part of a new campaign promoting their children’s sportswear range. It didn’t take long for the campaign to go global during its month of release and within a matter of weeks, Kaiden’s story was being covered in newspapers such as the Metro and The Independent and also featured on the BBC News.

Currently signed with children’s modelling agency, Ray and Robin, Kaiden is enjoying his new found fame as a face of Primark and judging by his fast growing Instagram page (kaiden_model_) where his profile describes him as having a ‘unique look with a bubbly personality’, he can definitely be regarded as one of Primark’s most prominent stars. We caught up with Kaiden, who developed Vitiligo when he was just 4 years old, to ask him about the campaign that went viral, being recognised and what life has been like living with the visible difference.


What was it like modelling for a global brand like, Primark?

Modelling for Primark was a privilege. Initially, I thought I’d see myself on the Primark website alongside a few small posters in-store, so when I saw my face looking back at me on posters that were 10ft in size, I was completely shocked! It was so overwhelming when my friends started sending me photos from the different branches where my photo appeared. It was then I realised the impact I was having as a face of the children’s campaign. Shortly after the campaign went public the images went viral and the media frenzy started. I couldn’t believe just how much interest was generated on the back of the shoot. Even today, I’m still shocked at how well it’s been received.

How did you feel when you first saw face on posters in Primark?

When I first saw my picture in one of the stores, I actually cringed especially as the store assistants were tapping each other and whispering about the fact they’d seen me on the posters. I felt really shy when I first saw myself, I remember thinking “Oh my gosh, that’s me!”. I didn’t feel one particular way I felt a mixture of emotions – embarrassed and proudness. I also wondered what my friends would think.

When did you develop Vitiligo and what has it been like for you growing up?

I was diagnosed with Vitiligo when I was 4 years old, my first patch appearing on my bum. Initially, my Mum thought I’d been burnt by nappy cream that she often used on my skin. Shortly after, a second patch developed on the side of my face and that was when I was officially diagnosed. Between the ages of 6 and 10, Vitiligo had spread right across my body. When I first understood that I had Vitiligo, I wasn’t sure how to feel so I relied heavily on my Mum’s support as she tried to regulate my emotions. I felt really confused by what had happened and questioned why I’d developed the condition. However, because my friends at school had watched my skin change over the years it was as though we were all experiencing Vitiligo together which was comforting. It also meant that they learnt about my condition as I learned more about what was happening to me. My Mum had always taught me to be comfortable in my own skin and how to handle inquisitive questions by making sure I understood what Vitiligo was and knowing what to say when people asked. Because of this I always felt confident and was in fact one of the popular kids in school! The biggest challenge was joining a new Football team (which I loved) and changing schools because it meant I started to question whether the other kids would accept me. When I started secondary school, I recall instantly feeling very anxious about how they would respond. When it came to changing into my Football shirt, despite those feelings, it was easier to get it out of the way rather than giving to much thought to the reactions of others. It was so strange. I was asked one or to questions and then nobody else cared. I’ve never experienced any form of bullying thankfully, and have always been outwardly confident, however, I do have my moments. When I was 10 years old, I was diagnosed with anxiety and because my Mum works as a children’s therapist she has taught me how to manage my emotions and also be open about how I feel. I think that being a model has really helped my anxiety as behind the camera I am able to be myself. A lot of my friends and family say they don’t even notice my Vitiligo anymore because they simply know me as ‘Kaiden’. When I first started modelling I was a model, but now it’s more than that. It’s me being a model with Vitiligo.

What advice would you give to others trying to accept their skin?

If I had to give advice to others who have Vitiligo, I’d say not to turn to camouflage creams or makeup in order to disguise your skin. I found this particularly troubling as it made it harder to accept my condition and taught me that I shouldn’t be comfortable with who I was. When my Mum said that ‘I didn’t have to wear makeup if it was going to make me uncomfortable’, it was like she knew exactly how I felt. I instantly interpreted that as being made to cover my skin rather than just being myself with Vitiligo. My Mum saying those words to me, was what stopped me from using camouflage creams. I quickly became comfortable and learned that I shouldn’t be afraid to leave the house with my skin on show. Sadly, I’ve had a few nasty messages from ignorant people on Instagram, but I am well aware these are small minded people and to be honest, I feel sorry for them more.


Now, I feel happy that I live in a country that accepts my condition and has lead me to do wonderful things, such as become a model. In some countries people with Vitiligo really suffer psychologically because of the stigma associated with having Vitiligo, and so I count myself lucky this isn’t something I have to face. Life has dealt me with such good cards so my advice would be, to look on the bright side as we live in a society that will mostly accept you and most importantly ignore the small minded people. Be yourself, love yourself and show off the marks that make you, unique.

Kaiden, we couldn’t agree more!

If you’d like to see more of Kaiden’s journey, follow him on Instagram.

2018 Vitiligo Society Annual Open Day roundup & videos


On Saturday 1st December 2018, we held our Annual Open Day and AGM at The Amba Hotel in Charing Cross, London. The event, which we fittingly themed ‘Vitiligo Under The Spotlight’, given the recent media coverage of Vitiligo across multiple platforms, was attended by both members and non members, making it our most successful open day to date.

The conference started with opening remarks by Trustee Natalie Ambersley just after 9am and continued with Society Patron, Vitiligo Spokesperson and Fox News Presenter, Lee Thomas, who we were incredibly fortunate to have join us for the day. As our highly anticipated keynote speaker, Lee delivered a remarkable speech which gave insight into his life in the public eye. A mixture of both humour and emotion, Lee shared stories about his life as a TV presenter, interviewing the likes of George Clooney, Tom Cruise and Charlize Theron, as well as what it’s been like living with a visible condition that is exposed for so many to see. For the majority of the audience members, the most poignant moment was hearing of Lee’s chance meeting with a 3 year old girl who was scared of his face after she ran into his leg and became frightened when he bent down to pick her up. Ultimately, it was an incident that changed his life upon reflection. It was no surprise that the room fell silent throughout his 30 minute slot which had the entire audience fully engaged and wanting to hear more about his interesting life in the US.

After the tone was set for the day, Simon Parker, Trustee and Digital and Technology lead, provided the latest on one of our exciting new initiatives, Skin Deep, a new guided meditation mobile app designed to help those living with various skin conditions. During his presentation, Simon provided us with some interesting stats behind the Mindfulness market which is currently worth a staggering $1.21 billion and also explained the benefits of meditation, how breathing can help the skin and what’s next for Skin Deep as it moves forward into the next phase. After a highly interesting morning, it was a great opportunity to have a mid-morning break and refresh with tea, coffee and cake whilst allowing our guests to get a little social with each other. From our point of view, it was great to see everyone engaging and having positive conversations about the event and meeting with those they recognised from previous open days or simply meeting others for the very first time.

Once re-seated and ready for the next session, we welcomed to the stage Joti Gata-Aura (BBC Misfits), James Stewart (Brock Elbank Vitiligo series), Shankar Jalota (Model) and Alec King (Model) for an honest, but equally informal conversation around Vitiligo, covering topics such as initial diagnosis, the challenges and the impact of social media as more and more people are opening up about their skin. During this session, what was empowering, was how each of the panellists had used their story to positively raise awareness across multiple media platforms. Much of the audience found this session incredibly insightful because it was an opportunity to hear directly from those who live day to day with the condition whilst bringing to light just how differently everyone copes with the condition. There were moments of emotion when James Stewart spoke openly about how he had suffered at the hands of bullying and how he dealt with slightly darker periods, whilst at the other end of the scale, Alec King, who has carved out a successful career as a model, spoke about the opportunities he has been given including walking the runway at London Fashion Week!

Straight after the panel session we held our AGM, a session we are legally required to have as a Charity. As part of the AGM, we reviewed the minutes from the 2017 AGM and voted on the following 2 Resolutions, which were both passed:

Resolution 1: That Marco Singh be re-appointed as a director of the Society under Article 34 of the Articles of Association the Society.
Resolution 2: That Simon Parker be appointed as a director of the Society under Article 34(1) of the Articles of Association the Society.

Time seemed to be moving quickly as we announced lunch just after 1pm. Courtesy of the hotel, an impressive buffet lunch was served for all to enjoy. Most people used the lunch break to mingle with others, purchase some of the Vitiligo memorabilia that was on sale and speak to Polly Gotschi (of Dragon’s Den fame) who was giving demonstrations of Vitiliglow, a great camouflage product range designed especially for those with Vitiligo who have a preference to cover their skin. There was also ample opportunity to have one to one conversations with Lee Thomas who was more than welcoming and open for photos with those who asked!

After a hearty lunch, we kicked the afternoon off with Fabio Zuchelli, a Research Associate from the Centre for Appearance Research at UWE Bristol, who spoke about Psychological Flexibility which focuses on being aware, open and accepting towards your moment to moment experience, and focusing on doing things that you care about. For the next session we changed the tone a little with Brock Elbank, who returned for his second year running to give an update on his photography series, which has featured over 60 subjects with Vitiligo and at the time of the open day, was coming to a close. He shared with us some of the newer subjects he has featured in recent months along with the connections he created as a result of meeting so many people with the condition.

After seeing some visually striking images through Brock’s work, next we welcomed Professor Celia Moss OBE, a Consultant Dermatologist at Birmingham Children’s Hospital, to the stage who gave a short presentation on the newly released children’s booklet, Vitiligo; My Story (download here – https://vitiligosociety.org.uk/files/Vitiligo-My-Story.pdf) which features the inspiring stories of the younger generation as they share with us what its like to be different in a world where being perfect is so highly regarded. It was a booklet in which The Vitiligo Society had the pleasure of working on in collaboration with the hospital, and given it was ready in time for the open day, meant we could provide copies for our guests to take home with them. With the day almost through, it was a great opportunity to introduce a guest we’ve never introduced before; international DJ and music producer, Simon Marlin, who joined us for a session! As one half of English – Swedish duo, The Shapeshifters, Marlin is best known for the single ‘Lola’s Theme’ which went to number 1 in the UK singles chart in 2004. As someone who also lives under the media spotlight, it was interesting hearing his story from the point in which he developed the condition to how he manages his jet setting lifestyle, which often means long lengths of time absorbing the sun. To finish the day, Dr Viktoria Eleftheriadou, from the Dermatology SpR at Leicester Royal Infirmary & Specialist in Vitiligo at the Centre of Evidence Based Research, who explained how healthcare treatments are developed, the explanation behind the outcomes of treatment and the challenges behind the outcomes in Vitiligo trials.

Closing Remarks
The day officially closed at 17:30 with Natalie thanking all our guests for joining us on such a positive and insightful day. It was great to have such a wonderful audience who engaged in conversion, asked questions and shared positive feedback. On behalf of the Trustees, Natalie showed gratitude towards the guests speakers who had given their time to share their knowledge and expertise. The atmosphere from start to finish was incredibly upbeat and for us, as Trustees, the most rewarding of all, was knowing we’d put together an event that was well received and offered new insight into Vitiligo.

https://youtu.be/LWjHhFNoxqc https://youtu.be/AJMMUipLGrg https://youtu.be/PyHi7sJs5Wg https://youtu.be/gknNHWP-OSU https://youtu.be/3pKN9sPgzJk https://youtu.be/4yQoX6Rk2jE https://youtu.be/ko1rUpl0Ocs https://youtu.be/j42hcYb5UVQ

HI-Light Trial – What it could mean for people with vitiligo

Back in May 2015, we wrote an article in Dispatches asking for volunteers to join the HI-Light Vitiligo Trial. This trial was testing two different treatments for vitiligo: home UVB-light therapy (using a small, portable device that could be used at home) and a topical corticosteroid ointment (mometasone furoate 0.1%). There was a lot of interest in the trial and our recruitment target of 517 participants was achieved in September 2017. Since then, we have been continuing to monitor each of the study participants to see how they get on with the treatments and whether their skin colour has returned. This assessment phase will be completed at the end of 2018, when we will start to analyse the results. This means that we should be able to share the results of the HI-Light Vitiligo Trial with you towards the end of 2019.

In the meantime, we thought it might be worth explaining about the possible outcomes of the trial and what that might mean for people with vitiligo. In the HI-Light trial, we had four main questions that we wanted to answer:

Is treatment with UVB light better than usual care with topical corticosteroids?
In testing out this question we might find that UVB light therapy is indeed better than topical corticosteroids, but it is also possible that the trial will show that UVB light therapy is no better than (or worse than) topical corticosteroids. Since home UVB light therapy is not currently available in the UK, if the trial results suggest no benefit, then it is unlikely that this new treatment will be adopted in the NHS.

However, if the treatment is shown to be effective, then the trial results could be used to build a case for developing new home light therapy services. We are also collecting detailed information about how the treatments have been delivered in the HI-Light trial, so that we can help key decision makers in the NHS to develop new services if they wish to.

Is the combination of UVB light with topical corticosteroids, better than using topical corticosteroids alone?
Some people think that vitiligo treatments are more likely to work if used together, so the HI-Light trial was designed to test this out. If using both treatments together is better than using topical corticosteroid ointment on its own, then this will help doctors to decide whether to prescribe two treatments at the same time or not.

If a treatment has been successful, how long do the effects last?
People with vitiligo have told us that this is an important question that they want to know when deciding whether to start a new treatment. Vitiligo treatments often take a long time to show benefits and treatments have to be used over many months – 9 months in the case of the HI-Light trial. This can be a considerable burden to people with vitiligo, and so it is important to provide information on how long the effects are likely to last. The results of the HI-Light trial might also help to inform future studies looking at how to stop the vitiligo from coming back in the same place once treatment is stopped.

What is the cost and cost-effectiveness of the compared treatments?
As with all healthcare, money spent on one treatment means that money is no longer available to pay for other treatments. If any of the treatments are shown to be helpful in treating vitiligo, then we will conduct a cost-effectiveness study to explore how expensive it will be to provide the treatments in the NHS and the likely benefits of doing so. Of course, if people have been unable to use the treatments for the full 9-months, then this will need to be considered when interpreting the study results. This will allow us to understand how the treatments work if used as intended, as well as looking at how they worked in real life. The Hi-light trial has been a learning experience for all of us and lots will have been learned, whatever the outcome. So, we look forward to sharing the study results with you next year and thank you for your continued support and interest in our study.

This project was funded by the NIHR HTA programme – project ref 12/24/02. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

News

Zebedee Management are on the lookout for new models with vitiligo

Zebedee Management are on the lookout for new models with vitiligo! The modelling agency, which aims to redefine the perception of beauty, specialises in using models with skin conditions, disabilities and other indifferences. They already have a large portfolio of models signed to their books, however, are keen to get in contact with people with vitiligo. Here are some of the testimonies from some of the models that have worked with them: 

“It has been great to be a part of Zebedee Management. What truly attracted me to them is their push for changing the status quo in the fashion, beauty and TV industry and, having a prolific diverse range of models and actors, only embodies the true change that the industries need in order to see the right change. I would recommend Zebedee to anyone who wants to show their true beauty off, no matter what your difference. 

Shankar, a model with vitiligo 

“Getting signed to Zebedee Management has been amazing. Laura and Zoe have help me spread my message about my ‘Mark of Awesome’, AKA my Port Wine Stain birthmark. Having a visible birthmark on my face I want to encourage others like me to embrace their Mark of Awesome. I am so happy to have the backing of Zoe and Laura. Here is to a bright future ahead of us.” 

Jake, a model with a facial birthmark known as Nevus Flammeus 

On the other side of modelling, the Founding Directors of Zebedee, Zoe Proctor and Laura Johnson, have recently been approached to advise the Government on policy change around representation in the fashion industry. They have already started this work by attending the Houses of Parliament last month as part of a round table discussion to represent all disabilities and differences for fair inclusion. As the only specialist modelling agency to be invited, they felt really honoured to have had this opportunity. Zoe and Laura have been talking to our models/artists about the challenges they experience in this area to ensure their voices are heard and changes are forthcoming so that they feel represented, normal and valued in the fashion industry. 

Zebedee is particularly interested in providing fair and sensitive representation of children and adults with vitiligo, aged 0-99! If you would be interested in applying, please send 3 or 4 clear photos, (a mix of headshots and full-length), stating your date of birth, height, clothes size, location, availability, experience (none necessary) and some information about yourself (or the person you are applying for) such as personality, hobbies/skills and details of their difference and experience to: 

apply2zebedee@gmail.com 

Website: www.ZebedeeManagement.co.uk 

Our awareness campaigns blog: 

Twitter: ZebedeeManagemt

Instagram: Zebedee_management 

Facebook: Zebedee Management 

Calling all Hi-light Vitiligo Trial participants!

Thank you to all members of the Vitiligo Society who have participated in the HI-Light Vitiligo Trial.

Many of you will have finished using the light device and ointment for the trial. However, some of you will still be using the treatments. If you are still in the first 9 months of the study then it is vitally important that you keep in touch with your research nurse, even if you have stopped using one or both of the treatments for any reason. This is particularly important for the final 9 month visit. This is the most crucial time point for the trial; even if you have not been using the treatments, please take the time to see your nurse or talk to them over the phone. This is the visit at which you will get to compare your vitiligo with photographs taken at your first visit.

Please remember:

Vitiligo tends to respond very slowly to any treatment; do not be discouraged if there does not seem to be a response to treatment initially, and please continue with treatment as planned.The treatments can take some time to administer and we understand you may be too busy to use one or both treatments. If this is the case, it doesn’t mean that you should withdraw from the trial. On the contrary, data collected from participants no longer able to treat is just important as those still treating.If necessary it is OK to stop using one or both of the treatments for a period, and then start using them again at a later stage, so long as this is recorded in your treatment diary. The overall aim is simply to use the treatments as much as possible. Please do not feel like you cannot tell the study team if you have stopped using the trial treatments – it is really important to stay in touch!

If you have had your 9 month visit with the nurse, please look out for the follow-up questionnaires that we will be sending you every 3 months for a year. These will either be sent via email or post. If you have not received any questionnaires or any of your contact details have changed please do not hesitate to get in touch with the Hi-light Vitiligo Trial team email hilight@nottingham.ac.uk or tel 0115 823 1586.

Thank you for your continued support and participation in the trial.

“Vitiligo – My Story” Booklet published.

Last year, The Vitiligo Society collaborated with Birmingham Children’s Hospital on a children’s booklet series entitled ‘Vitiligo – My Story’.

Part of an ongoing series that brings focus to a number of conditions both children and adults suffer with, the ‘Vitiligo – My Story booklet was a great way to bring together the stories of regular children who openly shared both the positive side and sometimes negative side of having Vitiligo.

After months of constructing a great selection of stories in the form of interviews, we are pleased to announce the booklet is now ready to download. Please find a copy for your viewing here.

“A No-Nonsense Guide To Vitiligo” by Yan Valle now available

Up until recently, Vitiligo has often been regarded as a misunderstood  condition, with many questions around treatment, management and what to do  after diagnosis, remaining a ‘grey’ area. The No-Nonsense Guide To Vitiligo is what’s needed within Dermatology and by those who have Vitiligo.  

This guide is for those of you who have been looking for a better way to manage Vitiligo. In this smart and accessible book, Yan Valle – author, 
tireless campaigner and CEO of Vitiligo Research Foundation – cuts through the myths and misinformation that surround Vitiligo to tell you what you really need to know.   

A No-Nonsense Guide To Vitiligo is based on Yan’s years of research and practical experience. It contains the hidden truth about Vitiligo and its connection with other diseases, common household items, daily stress and environmental factors. 

Yan shares proven techniques you can use to detect the early signs of Vitiligo, identify potential triggers, be confident about available treatment options, their efficacy and possible side-effects. A thoroughly researched, easy-to-read and jargon-free guide to Vitiligo – this is essential reading for Vitiligo patients, or anyone interested or has a close connection with the condition. 

Now available in ebook and print formats through Amazon, iBooks, and Smashwords:  

Buy on Amazon now

About Yan Valle
Yan Valle is a writer, vitiligo spokesperson and strategist. He has written extensively on skin research and care, including numerous peer-reviewed publications, benchmark studies, and reports. He has also been a keynote speaker at many dermatological conferences. 

As a patient of Vitiligo since around six years of age, Yan has gone through every common pitfall known to a person diagnosed with vitiligo: misdiagnosis, years of non-treatment followed by bursts of mistreatment, self-prescription and self-medication, to name a few. 

As a professional, Yan went from nearly three decades in the high-tech and business development sector to become Chief Executive Officer of the non-profit Vitiligo Research Foundation, based in New York, USA.

Now Yan is actively involved in improving quality of life for those affected by this neglected disease at VR Foundation and the United Nations.  A frequent lecturer, Yan also serves as an visiting professor at the University of Guglielmo Marconi in Rome, Italy.

A magnificent seven. Volunteers needed!

The Vitiligo Society is looking to broaden its experience in a number of areas as part of its modernisation programme. To this end, seven new director based roles have been created to sit alongside the current Board of Directors.

What is involved?

These roles are on a volunteer basis and expected to take up no more than 4 hours per month. These roles can be located anywhere in the UK, but are expected to be able to travel to London around twice per year. Most board meetings will be done via conference calls. In all cases the roles require a bias towards digital/ web based initiatives. All roles are Director roles, and will form part of the Board of Directors, with full voting rights.

Make a difference

Directors are expected to either have Vitiligo or have a close personal connection with Vitiligo. The Society is at a crucial period of inflection as it looks to become fit for the digital age and there is huge opportunity to make a difference not only in improving how the Society operates but also improving the lives of thousands of people with Vitiligo.

How to apply

Seven roles are outlined below. Should you be interested in applying, please send your CV to marco.singh@vitiligosociety.org.uk. The deadline for submissions is 28th February 2018. This will be followed by a brief telephone conversation with one of the current Directors followed by an invitation to join a Board meeting in an advisory capacity. Final confirmation of roles will occur by 31st March 2018.

The roles in more detail

The seven roles are described in more detail below.

1. Director – IT Systems & Operations
Focus: the Society’s current systems including website, communications, databases, document creation and storage.Expectations: to advise on optimal cost effective systems solutions for the Society to reflect its appetite to lead with a digital first strategy.Desirable skills: experience in improving or introducing new systems and software in order to improve operations. Experience of creating / managing websites and web content.    2. Director – Accounting & Controls
Focus: the monthly book-keeping for the SocietyExpectations: to advise on most appropriate accounting system for the society to reflect its move to a simpler operating modelEssential skills: an accounting/book-keeping qualification or QBE   3. Director – Commercial & Fund-raising
Focus: identifying and pursuing sources of revenue for the Society.Expectations: working closely with trustees to shape promotional, marketing or educational campaigns and identifying associated revenue opportunities either through grants, commercial ties, merchandising or direct appeals.Desirable skills: experience within a sales or marketing environment. Experience of creating / managing websites and web content.  4. Director – Clinical
Focus: bring a medical / research based perspective to The Society’s operations.Expectations: to be the main point of contact for all medical interactions between The Society and other parties. Responding to medical queries, interacting with other clinicians, ensuring all communications are correct form a medical perspective. Ensuring The Society and its trustees are up to date with regards to latest research.Essential skills: a medical professional with a track record of working with Vitiligo. 5. Director – Children & Education
Focus: identifying and delivering educational initiatives on behalf of The Society to also include a focus on under 18’s.Expectations: Driving The Society’s educational strategy within existing resource constraints. Leading all initiatives that involve improving members understanding of Vitiligo, making sure all initiatives are evaluated form an under 18’s perspective.Desirable skills: experience within the educational sector or working with youngsters who have Vitiligo or other similar conditions. Experience of creating / managing websites and web content. 6. Director – HR
Focus: all HR issues relating to the employment of staff, volunteers and Directors.Expectations: subject matter expert on all HR matters. Will advise on the process of moving to a volunteer only basis mode of operations.Essential skills: must be a HR professional with direct experience of redundancy processes and procedures.  7. Director – Legal
Focus: all legal matters relating to the operations of The Society and its articles of association.Expectations: advise on legal issues including the AGM, interactions with Companies House, Charities Commission and employment law.Essential skills: qualified legal practitioner with experience of company law.

MHRA & BAD warning: Etin Skin Solution found to contain corticosteroid betamethasone

The Medicines and Healthcare products Regulatory Agency (MHRA) and the British Association of Dermatologists are today warning people NOT to purchase or use Etin Skin Solution, a lotion claiming to treat skin conditions and known to have been supplied from various Asian and African beauty shops.

Etin Skin Solution was brought to the attention of MHRA by a consultant at Birmingham Children’s Hospital who became concerned following a complaint by a patient. Investigations to identify the source of this product are being conducted.

MHRA has recently tested samples of the lotion and found it to contain variable amounts of the corticosteroid betamethasone. Etin Skin Solution is not authorised for use as a medicinal product in the UK.

Corticosteroids are prescribed to treat inflammatory skin conditions, especially eczema and psoriasis. Long-term use can cause skin thinning and can worsen conditions such as eczema. Another listed ingredient is clotrimazole which is used in anti-fungal medications.

There are strict legal requirements in place in the UK relating to the sale, supply, manufacture, distribution and advertising of medicinal products. The legislative controls seek to ensure that products meet certain quality and safety standards; a breach of these legal requirements may constitute a criminal offence. The MHRA investigates any report of suspected illegal activity concerning medicines, or medical devices, and takes appropriate action.

MHRA senior policy advisor, Lynda Scammell said “Our advice to anyone who is using this product, particularly on young children and babies, is to discontinue use immediately. People seeking help for skin conditions should discuss alternative treatments with their healthcare professional. Medicines containing corticosteroids should only be given under the supervision of a doctor or pharmacist.”

Professor Celia Moss, Consultant Dermatologist at Birmingham Children’s Hospital and one of the hospital’s staff who brought the product to MHRA’s attention, said: “We discovered the availability of this product after it had been used on the skin of a baby in our care. A nurse from my team visited the shop where it had been purchased and found it was freely available on one more than one occasion. We reported this to MHRA and are pleased it has been investigated and action taken.

“However this is just one outlet and it is hard to police every supplier. We are therefore warning people not to use Etin and to report its sale to MHRA. Anyone using a steroid lotion such as this is likely to perceive some short-term benefit, because steroids make red skin look paler. This is because steroids constrict blood vessels in the skin. Unfortunately on discontinuing the product the redness may come back, which of course makes people want to continue it. But to do so is unwise, and after a few days the skin will revert to its previous appearance.”

Dr Firouz Mohd Mustapa of the British Association of Dermatologists said: “Milder steroids for short-term, localised use can be purchased over the counter from a pharmacist, but potent steroids such as this must be prescribed by doctors, who follow strict criteria when prescribing them and monitoring patients using them. This is because they can suppress the skin’s response to infection, can thin the skin, and if applied long term over a wide area, particularly in babies and children, can cause other medical problems.

“For babies and children, NICE guidelines set out clear recommendations on when it is appropriate for dermatologists to prescribe these potent or very potent steroids, the appropriate locations of the body on which they can be used and the duration of treatment. Sale of potent steroid creams directly to the public is illegal for good reason.”

Skin PATCH survey results

The survey of products for camouflaging hands has been a joint venture undertaken by the Vitiligo Society and the British Association of Skin Camouflage.   The survey addresses the  problem that traditional camouflage washes off too easily for use on the hands.Volunteers tested 10 products over the course of 6 months during 2014. The products are all readily available in the UK, but not on prescription.   The following is the text of a presentation given by Liz Allen of the British Association of Skin Camouflage  (BASC) at the Vitiligo Society Open Day in November 2014.

At BASC, we  have known since the 1950s that camouflage is a great support mechanism for people with vitiligo and other skin problems but we are also aware  it may create vulnerability most notably over hands and other salient areas because it quickly washes off and can be easily removed with emollients  (including some sun blocks).  It can also soil clothing, paper or even computers and mobiles.  Embarrassingly, it may also transfer to another person when we shake their hand.    If this rubbing off could be overcome,  the potential would be enormous.

The Idea Behind the Survey

BASC knew that faux tans might help, but had no evidence to judge their effectiveness. We also knew that faux tans are designed for skin groups 1 and 2 and not for everyone.  Then, sometimes the finger of fate takes a hand (excuse the pun).  In September 2011 Jennifer Viles accepted the BASC’s invitation of a bursary  and attended our training event (so that the Vitiligo Society could provide its own camouflage service for its members), the FIRST THING she said was how do we keep camouflage on hands? Discussions followed and we decided that a PATCH Survey would help to define the problems.

Preparations for the Survey

Our preparations included speaking to the manufacturers of faux tans, theatrical products and long-lasting cosmetics.   We caught their curiosity sufficiently for them to supply products for the trial.  Their only requirement was that there would be no comparisons made between the brands and that their brand would remain anonymous.  Since we intended that the PATCH Survey would not be brand comparative, we were more than happy to agree these conditions.  To ensure blind testing Norma Bird of the Vitiligo Society  and Liz Allen of BASC spent many hours decanting seven of the ten brands used into identical plain bottles. (The other three products were not in liquid format).

Starting the Survey

Having secured equal funding from both the BASC and Vitiligo Society, we recruited participants.   34 people volunteered at the launch on 17th August 2013.  9 were from skin groups 3-6 and 25 were from skin groups 1-2.   We also added Liz Allen to act as a control – someone who does not have  vitiligo.    Participants were each allocated a unique number, which meant that Pam Davison who analysed the results, had no idea who said what; neither did she know the brand identities.  We were delighted that 32 of the volunteers stayed with us throughout the six month long survey and returned their questionnaires on time. 

Results 1: Medical History Outcomes

Diabetes and Thyroid

There is a rumour that faux tan does not stain the skin of someone who has vitiligo and is also diabetic. Various experts could not suggest any medical reason to explain this. So,to resolve everyone’s curiosity, we included questions relating to the participants medical history.  We got very excited when the only diabetic  participant reported that two brands lasted  3 and 10 hours respectively…but then any hope that we had stumbled upon a medical implication was dashed because the other three faux tan brands tested had a duration of between 2-3 days each.  As the participant had stated an overactive thyroid too, could this be a contributing factor?  Curiously, seven others also had an over or under active thyroid, who reported the durability of the faux tans as,

–     duration between 1-7 days (6 with underactive thyroid)

      duration between 1-3 days (1 with overactive thyroid)

Other Medical Histories Outcomes

One participant with epilepsy reported that all brands lasted 2 days.  One  participant with high cholesterol reported that  all brands lasted 1 to 4 days and  two participants with arthritis reported one brand as lasting 15 hours whilst others lasted 2½ to 4 days.  Of the three participants with psoriasis, two stated two brands washed off immediately but  the other brands lasted a minimum of 2 and a maximum of 6 days (so we assume desquamation of plaques did not have an effect)   Of six  participants with hypertension two stated two brands washed off after a few hours but all stated the other brands duration was a minimum of 2 days and a maximum of 7 days.  Fifteen participants stated that they had no medical condition (other than vitiligo) of which one person reported that one faux tan brand did not take at all, that 3 other products lasted 2-5 hours, but one brand over 24 hours.

Conclusion

Given the results,  we concluded that there was no evidence  that the duration of a faux tan was affected by other medical conditions.

Results 2:  The Effects  Of  Hand-Washing

Camouflage is easily removed with soap and water, so we asked how many times participants washed their hands each day.  Everyone used toilet soap (either liquid or tablet), some of which might contain antibacterial properties, and a few used wet wipes.  We had no method of measuring how surgeon scrub-up practices are, or if the usual areas (including fingertips) were missed, as reported in the Journal of Community Nursing (Vol. 28 no.2 2014 – The importance of hand hygiene in preventing the spread of infection).

Conclusion:

There did not seem to be any relationship between longevity of faux tan products and frequency of washing hands. Indeed, the participant who washed their hands up to 30 times each day still achieved a faux tan duration of 2 to 3 days! But, predictably, hand hygiene affected the stability of the other products tested.

Results 3:  Usability

Not knowing who would volunteer, we created an equal number of trial sets for Skin Groups 1 to 3 and Groups 4 to 6.  The survey responses confirm no significant differences between the skin groups.  We did not anticipate any product would be an acceptable skin match, but for half the participants this was so!

Questionnaires-Product numbered was a traditional skin camouflage creme with powder and fixing spray applied to the volunteer at the launch day.  Those numbered b 4 5 & 6 were theatrical and long lasting cosmetics; faux tans were numbered 1 2 3 7 & 8.   Volunteers received an equal mix of cosmetics-faux tans to both 3-monthly trial periods.

On average the theatrical products and traditional skin camouflage creme and powder took very little time to dry; faux tans took twice as long, or longer.  A dissatisfaction with faux tans was the time taken for a colour to develop instant colour (seeing the final colour) was preferred.

All the products issued had a brush applicator, so it was no surprise that the favourite applicator was the pen.  BASC appreciates that people prefer to have precision control when applying their camouflage, and that blanket cover by aerosol or similar method is quicker when application is to a large lesion or whole arm or legs.

The general view was that all products smelled pleasant, or were acceptable.  However, there were a few exceptions who considered some faux tans smelled of chemicals.  Ten participants did not like the feel of camouflage-powder and fixing spray on their hands, but consensus was that overall the other products had a nice texture and were pleasant to use.

Results 4:  Durability

As we expected,  everything lasted longer than traditional camouflage even when it was for just six hours because six hours is a night out; six hours is a serious shopping trip; six hours is nearly a day’s employment

Now we have the evidence to take back to the manufacturers and to ask them to consider making longer lasting cosmetics and faux tans in natural skin colours.  At the time of going to print, BASC have spoken to FOUR manufacturers-distributors involved, and they have agreed to explore expanding their colour range.  Additionally, two manufacturers who were not involved have indicated to BASC that they, too,  will consider creating faux tans that mimic the natural colour of all skin groups.  We’ll let you know how these exciting developments progress.

The PATCH Survey could not have taken place without the support of all involved, especially our happy band of volunteers!
So a big THANK YOU to all.

New article on vitiligo published in the Lancet

A new article on vitiligo  has been published  (January 2015) in the Lancet on the topic of vitiligo under the authorship of Khaled Ezzedine, Viktoria Eleftheriadou, Maxine Whitton, Nanja van Geel.   It presents some new insights into the incidence and treatment of vitiligo.  Recommended reading.

Download the article