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Author Interview: Dappled by Lisa Brown

Lisa Brown an Occupational Therapist from Perth, Western Australia recently released ‘Dappled’, a novel inspired by vitiligo which she developed when she was 14 years old. Like many who have developed the condition, Lisa says the condition has had a significant impact on her psychological wellbeing and could have benefitted from books such as Dappled that feature characters with the condition. In her debut novel, Lisa shares the journey of Jane who has vitiligo, touching on key themes such as love, loss, friendship and self-acceptance. We caught up with Lisa to find out about her own journey and what inspired her to write a book…..  

Do you have vitiligo? If so, can you tell me a bit about your journey with the condition?

I first noticed a big white patch had appeared on my knee when I was fourteen years old after falling off my bicycle onto the gravel road. I didn’t think much of it and just hoped it would go away. It looked so obvious sitting there in the middle of my olive-toned skin, especially as some of the other kids at school had started making comments and asking what it was. Mum took me to see a Dermatologist, who told us it was vitiligo and there was nothing we could do about it. I remember feeling dismayed but thinking back, I didn’t truly realise the full impact of the diagnosis because for years I just had that one patch on my knee.

I’ve sometimes been asked whether it was easier having vitiligo as a teen or an adult. Personally, I would say there were aspects that were challenging about both ages for different reasons. As a teen, I had far less patches than I do now, so in some ways that made my younger years with vitiligo easier. However, I think the patches I had back then bothered me a lot more because I hadn’t developed the coping skills to deal with them yet. 

I suppose I am fortunate that I haven’t experienced any overt bullying in relation to having vitiligo. However, I’ve often experienced stares and questions. Even though most of the time I don’t think people mean any harm, I would often dwell on these encounters for a long time afterwards. One time, years ago at work, a colleague asked me loudly in the staff room “Oh no! What happened to your hands!?’’ 

As an adult, I have many more patches but am blessed I have a job that helps support me every day in my acceptance of them. I meet people all the time that have been through such incredibly difficult experiences and are still smiling. They are a real source of inspiration to me. 

The work I do as a therapist largely involves encouraging people to be proactive on working on the things they can change, however equally trying to find some kind of peace with the things they cannot currently change… and I apply this to myself too. I do what I can to support my mind and body with my vitiligo, like eating a nourishing diet, being conscious of stressors in my life and being mindful of my own thinking patterns and whether they are helping or hindering me. I also have a very supportive partner and two wonderful, young boys to raise so I think that’s helped me not be so preoccupied with my vitiligo too.  

Tell us a bit about the book you recently released; Dappled. Does the main character have vitiligo? What are some of the challenges the character faces as someone with vitiligo?

When I wrote Dappled, I wanted a book that explored a number of themes, including love, loss, friendship, mental illness, disability, and self-acceptance.  

Being a group therapist and Occupational Therapist working in mental health and teaching neuropsychiatry and recovery, these themes were already close to my heart and so I felt inspired to write a story that included all those areas. I also wanted to include a big dash of humour in writing about these serious themes… as what is life without it!? As much as I wanted to tell a story, I’ve always intended Dapped to be a book that readers could have some real laugh out loud moments with too. Dappled is also about a young woman, Jane and her journey with vitiligo. Having vitiligo too, I wanted to read a book about someone else with the condition that understood the struggles, whilst being warm, hopeful and affirming. It was a book I couldn’t find….so I decided to write it.

Jane had a difficult home background. Her path to self-acceptance is not an easy one and so the story explores the comments she was sometimes subject too and as with many with vitiligo, the negative self-talk we sometimes place upon ourselves. Eventually, she meets someone who doesn’t see her white patches the way she does. He only sees her…. 

Meeting this special person inspires her to consider the concept that she can be beautiful and dappled at the same time. She can potentially see herself through an entirely different lens. Along her journey Jane discovers, healing cannot come from anywhere external – it needs to come from within.

What inspired you to write a book that features a character with vitiligo? 

Vitiligo is still so underrepresented in society worldwide. I wanted to spread community awareness about the condition and write a book that would have helped me when I got my first patch when I was fourteen. Jane is such a relatable character for those with vitiligo and for anyone who’s ever experienced anything that makes them different to anyone else. 

Whilst Dappled explores many themes and would cater to a wide readership, it’s also intended as a tribute to the global vitiligo community. I wanted people to read a story that understood the struggles of having vitiligo, however, also showed that love and self-acceptance is possible when living alongside this condition. 

Dappled is now available on:

https://www.amazon.com/Dappled-Lisa-Brown/dp/0646814729

eBook: $2.99 (US)

Paperback: $11.39 (US)

Free for Kindle Unlimited Membership

Looking for love this Valentine’s Day? Why vitiligo shouldn’t be an issue when dating

I’ve often found as I’ve spoken to more people with vitiligo, the subject of dating is a pretty taboo subject. Its one of those subjects that creates a lot of discussion, divided opinion and for some, can be quite sensitive as ultimately it means trusting someone and feeling comfortable about showing our skin in front of a potential partner. 

Dating can be difficult in general but what does dating look like when you have vitiligo? For some, especially if they have vitiligo extensively, it can overshadow the entire experience, altering what we to choose to wear and possibly, how we come across on the actual date. Speaking from personal experience, I can recall occasions in the past where I’ve been on a date having good conversation and feeling fully engrossed, however, at the back of my mind part of me would be waiting for the dreaded question that felt like it needed a drum roll beforehand “So…what happened to your skin”? and in that single moment, my confidence would suddenly crash as my brain frantically tried to figure out how to answer. 

Vitiligo, or any visible skin condition for that matter, can sometimes make you feel like you can’t be yourself. Aside from simply feeling confident ahead of a date, there is also the added pressure of making sure your makeup is looking flawless (ladies!) and your hair shows up at its best, and for some, one of the hardest decisions to make is what to wear. We often find we ask ourselves internal questions such as ‘do I wear something that covers my patches?‘ or ‘do I dress freely in something that I really like, but carries the risk of me being asked about my skin?’ Again, personally speaking, I was the girl that would always cover-up, often choosing skinny jeans, a blouse with long sleeves with a fitted blazer on top because I was too self-conscious about wearing something that would show the patches on my arms. 

Thankfully, as I’ve got older, not only have I learnt more about dating but my ability to self accept has meant I can dress more freely and be more open with how I want to express myself through fashion because after all to accept me is accepting my vitiligo too! From close male friends that have given me honest opinions, one of the things I’ve finally been able to accept is a potential partners choice as to whether they like you isn’t based purely on what is on the outside. The inside actually counts too! Here’s what I’ve learnt…

Does vitiligo need an introduction?

Urm…no. Your skin is very much part of who you are and for most, who you’ve become. There is no denying that, but don’t let it be the sole purpose of your existence. There is so much more to you than your skin. When you meet someone for the first time, don’t feel pressured to explain what it is, or worry beforehand at the prospect of it becoming a topic of conversation. Talk about all the other stuff that makes you who you are – your love of sport, your passion for laughing or travelling to faraway places because they are the things you love and that make you happy. Let the topic of your skin come up naturally. When it feels right. Don’t make it a subject to be afraid of. Your skin is part of you, it’s not the only thing that makes you, you.

We are responsible for our own happiness

Try not to have the expectation that it’s the other person’s job to make you feel good about yourself. We all love a compliment especially when we’ve spent 3 hours getting ready! We want to know that it’s been recognised by the person we’re on a date with BUT try to avoid feeling as though a compliment is validation that you look good. Just know that YOU look good. I’m guilty of once thinking that it was a guys job to tell me my hair was looking fly or my outfit complimented my figure as a means of making me feel comfortable but I soon realised I’m responsible for feeling good about me and any additional praise is a lovely bonus!

Your date or partner isn’t as concerned about your skin as you might think

Apologies if that is borderline blunt, I just want to build on the point that your skin isn’t what determines who you are as a person. I can’t speak for everyone but honestly; most people are not worried about your skin unless they are super shallow and are solely driven by appearance. Imagine the scenario; you’ve been talking for weeks, you’re feeling each other’s energy and you’re building on the feelings of a really nice vibe between you. You’ve arranged a great meeting spot and you’ve chosen the outfit that makes you feel confident. When you think of everything that surrounds that vision, where does Vitiligo fit in? I’d love if you could honestly say ‘it doesn’t’.

I remember catching a guy staring at my hands once. Honestly, the sheer sight of his eyes transfixed on my bright white hands made me come over with a hot sweat as I started to envisage what he must have been thinking. I wanted to crumble right in the very moment. Seconds later, he took my hand in his and told me how beautiful they were and then proceeded to tell me how his cousin had developed Vitiligo when he was 12 years old. Not only did it make me realise just how negative my thought pattern was, but just how common it is for people to actually know someone with the condition. For me, it really broke the ice in the most endearing way. I valued his honesty and the openness he showed which made me reflect and realise just how important it is to be yourself.

Confidence is an incredibly attractive quality 

Both men and women love to know that their partner is confident. If you look around you especially on social media, there are endless advocates and influencers promoting body confidence and embracing all that they are aesthetically. I’m not suggesting that everyone wants to date someone who has a unique quality, but what guys and girls do like is someone that loves themselves. Loves that they are accepting of themselves and are not too focused on the idea of perfection. They are probably quite fun people to be around! 

If you’re content, comfortable and realise your own self-worth, then your date will see those things shine through. Alternatively, if you are someone who isn’t comfortable in their own skin and you express that, not only can it put pressure on a relationship but it can become hard for you to be persuaded otherwise because you are so convinced your skin isn’t worthy of being beautiful. It’s your skin, wear it with pride.

STOP with the assumptions

Don’t make any assumptions about what you think the other person is thinking. You will never really know unless you are a mind reader, so let conversations take place naturally and enjoy the moment without being paranoid about what might be going through their head. I’ve had dates where guys have asked me about my skin and others where they’ve not asked me at all. I used to find it strange if I wasn’t asked because I naturally assumed they must be curious. Some guys ask on the first date, others might ask on the 5th. Accept everyone is different and for some, it’s not a hot topic that needs to be discussed straight away. 

I’ve stopped looking at it too deeply. If the guy I’m on a date with doesn’t ask, I’m open to the fact it doesn’t bother him. I’m also open to the fact that he might ask another time, but for now, I relish in the fact he getting to know me and my potential as a partner and not my skin. 

Lastly, make a promise to yourself…

The next time you are getting ready for a date focus on the things that are important. Be present in the moment, for example, what you feel like wearing, whether your nails match your outfit and which scent leaves the best trail behind you because they are the things that are instantly noticeable and appreciated.

Nerves are natural and are to be expected – even for the most confident dater. As is, changing your outfit three times because you can’t decide whether skinny jeans look better than trousers, but don’t add Vitiligo to the list of things to worry about. That can come later, but preferably not at all…

Disclaimer: My posts are never written to offend. They are my personal viewpoints based on my own personal experiences. I hope you enjoy reading!

Mattel Releases a new range of diverse Barbie dolls including a doll with vitiligo

Toy company Mattel, last week launched a new line of diverse Barbie dolls including a doll with vitiligo. The collection, which also includes a doll with no hair, a prosthetic limb and a wheel chair, is part of the fashionista range, which aims to promote diversity and celebrate the importance of inclusivity. 

The vitiligo community became aware of the vitiligo doll in 2019, when the news circulated that Mattel was planning to create a doll with white patches and so when the doll finally hit the shops and became available online, naturally all those within the community couldn’t wait to purchase the first ever toy that looked like them and represented them in such an empowering way.  

Kim Culmone, SVP, Global Head of Design Barbie & Fashion Dolls at Mattel, told The Vitiligo Society that “The expansion of our Barbie Fashionistas range shows our commitment to designing a line that celebrates all kinds of beauty and evolves the brand to be more reflective of the world kids see around them. Representation matters because seeing yourself or others reflected in the dolls you play with has the power to build self-esteem and empathy.”

The doll, which has patches around each eye and on its neck, sold out online shortly after it was launched. First introduced in the US, the doll is now available in UK toy store, Smyths along with the rest of the range. In order to best represent vitiligo, Mattel also consulted a Dermatologist during its design phase to ensure the patches were correctly represented on the doll. 

Earlier this year, Mattel donated 56 dolls to this year World Vitiligo Day conference which takes place in June. Alicia Roufs, who heads up the Minnesota VITFriends support group and are this year’s event organiser, said of Mattel’s kind donation 

“I would have given anything to have a doll with vitiligo as a child. To be able to see myself in the form of a doll would have meant the world because as far as I was aware no one else looked like me. Our community has spoken up and will no longer be silenced and because our voice things like the vitiligo Barbie doll have happened. We made this happen”. 

Personally speaking, I feel this is an incredible breakthrough for the vitiligo community. Growing up in the 80’s dolls were a standard colour and looked a particular way, so to now have a doll with vitiligo, that has patches just like us, proves we are moving in a positive direction where brands such as Mattel, understand just how important it is that everyone in society is represented. It shows the reality of what society is today…people that are made up of different shapes, sizes and skin tones. This is what we should be showing the next generation, that everyone has the right to be represented. Mattel has really raised the bar with this new innovative product line. I just hope it inspires other brands to think about how they can represent the wider society and bring products such as these into the market. 

The vitiligo doll can be purchased at any Smyth’s store.

News

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, five 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 a minimum of 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

Five roles are outlined below. Should you be interested in applying, please send your CV to hello@vitiligosociety.org. 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.

The roles in more detail

The roles are described in more detail below.

1. 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 web content.  2. 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. 3. 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 web content. 4. 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. 5. Director – Alliances
Focus: To act as the main point of contact for both national and international partnerships with vitiligo charities, working groups and medical/research organisations. We are looking for someone to grow our partner network in order to stay on top of the latest vitiligo information around the globe. These alliances are critical not only to providing the latest information to those living with vitiligo in the UK but also a channel for us to input our own feedback into these global initiatives. It’s important this candidate is personable, proactive and have an active interest in building relationships with vitiligo thought-leaders around the globe. An interest in the science/research behind vitiligo is a bonus!

For further details, check out https://vitiligosociety.org/become-a-trustee or email hello@vitiligosociety.org.

2019 has been an amazing year – Thank you.

Happy Holidays!

As 2019 draws to a close, we wanted to say thank you for all the support we continue to receive. Over the last year, The Vitiligo Society has continued to work hard to provide education and support for those living with vitiligo, raising awareness and promoting wider acceptance.

We have undergone a digital transformation, launching a fantastic new website and online magazine, The VitLife. We’ve continued to strengthen our partnerships with medical professionals and this has given our members the option to be a part of the latest research and trials.

We remain the primary UK charity and have expanded our reach by attending the US World Vitiligo Day conference. This allows us to influence the vitiligo community at a global level and report the latest news for our members and supporters.

Early in 2019, we completed a successful early private testing phase for Skin Deep, a new mobile app from The Vitiligo Society which is currently in development. It aims to provide therapeutic support for those living with skin conditions by providing tailored guided meditations to deal with difficult emotions. We received incredible feedback from our early testers and we look forward to moving forward with the project in 2020.

Overall, I loved the app and don’t have much to suggest or improve on. The audio and meditation content was amazing and spot on – it encompassed exactly how I felt as someone with a skin condition/vitiligo without being too condescending nor insensitive…

…I really love this app and the intention behind it. I look forward to using it more frequently once it is finished with development and truly appreciate what you have done.

If you’d like to know more, visit the dedicated Skin Deep website.

I’m also pleased to announce that this year we welcomed a new Trustee, John Dunster. By day, John is an HR Director for Centrica and brings a wealth of business operations experience to the Society. John has been a fantastic addition to the team and he’s equally as excited for the future of the charity.

The growth of vitiligo in the mainstream media grew astronomically in 2019 thanks to the brave models with vitiligo breaking into the industry. We’ve seen major brands such as Dove, Larsson & Jennings and Primark use models with vitiligo in their ad campaigns. Off the back of this trend, we’ve taken this opportunity to build relationships with media outlets in order to increase awareness and further educate the public on vitiligo.

Moving into 2020 and beyond, our aims are to further this progress, continuing our events, partnerships and education work, as well as looking into innovative ways that we can provide support to the vitiligo community globally, helping to inspire, encourage and promote a more inclusive atmosphere for those dealing with the condition.

Interested in volunteering in 2020?
Without our incredible volunteers, the Society simply couldn’t do what we do. They are at the very heart of our work. And we’d love you to join us.

Whether it’s raising money, increasing awareness, inspiring people to become a member or even with operational activities within the charity, we’ll find the right role for you.

In return, you’ll get to meet new people, gain new skills, boost your CV & LinkedIn profile – and feel good knowing you’ve helped people that are living with vitiligo on a daily basis.

If you’d like to know more about volunteering, please get in touch by emailing us at hello@vitiligosociety.org.

As a charity that is volunteer-led, with a small board of trustees, it is your membership, donations and support that keeps us going, we thank you again for this and wish you a happy and successful new year.

For and on behalf of the directors of the Society,

Yours sincerely,

Eyal Raveh
Chairperson, The Vitiligo Society

Black Friday? Cyber Monday? Give back by making a #GivingTuesday pledge

Giving Tuesday is a global day of giving, which encourages people and organisations to support charities and good causes that have helped, supported and positively impacted their lives. It is a day to shine the light on the good things that so many charities do, like the work of the Vitiligo Society. 

Created in the US in 2012, Giving Tuesday isn’t just about monetary donations, as the name would suggest. There are so many other ways you can give; such as volunteering your time, donating goods such as food or clothes, arranging a community event or bringing together a community of people to help support a good cause. The key to Giving Tuesday is simply, generosity. 

Since 2014, the UK has acted as an official partner of the global movement, which has seen positive growth every year as they bring charities, businesses and organisations together. The great thing is; people are keen to support including celebrities such as Victoria Beckham, Cara Delavigne and Michelle Obama. Alongside the social media campaigns and advertising, it is clear that people from all over the world are keen to give back, share their stories and reveal what it means to ‘give’.

So, today, on this global day of recognition, I wanted to share my own giving story as I reflect on my time at The Vitiligo Society. 

What inspires me to give back?

I have been a trustee at The Vitiligo Society since 2017 and I can honestly say its one of the best things I’ve done in relation to working with a charity. 

As a woman with vitiligo, the Society has always remained close to my heart so when I was asked to join the team as a trustee, I didn’t hesitate in saying yes. 

Being at the Society has given me the opportunity to give back to the vitiligo community. Like many people with the condition, I spent many years struggling to come to terms with the fact I had the condition because in the physical sense, it made me look so different to the average person. Growing up in the early ’90s and even the beginning of 2000 was difficult because there wasn’t the strong community network like there is today and there was no such thing as social media, which meant my only support was family and friends. Aside from talking to them, vitiligo wasn’t something I was open to discussing. 

Moving forward to current times and the vitiligo community is impressively large. I manage the social media accounts for the society, sharing inspirational stories, news within the community, photos and making every effort to inspire those who follow us. We get endless messages, in particular on Instagram, from followers who love the work we do, feel inspired by the images we share and most importantly have felt so empowered that it has encouraged them to be open about their skin. For me, it’s the most rewarding part about what I do because it makes a difference; it shows vitiligo in a completely different light….one that many couldn’t have imagined was possible. 

For me, being part of the Society has been life changing. Whilst being a trustee has developed a number of my personal skills, such as public speaking, presenting and writing as the editor of The VitLife, it has also allowed me to support others, especially the younger generation and those in their teens, who might be absorbed by Society’s ideals of perfection. Being part of the Society means we are able to remind the community that we too are beautiful and have a skin condition that is unique and something to be proud of. 

A few years back, prior to becoming a trustee, myself along with my mum, sister and a few other girls with vitiligo took part in a fundraising event called ‘Walk For Skin’, which was a 6-mile walk around Kensington, London. I’ll be honest in that fundraising isn’t something I have regularly done, however, raising funds for the Society because of the work they do, was something I felt honoured to do. I recall it taking place in the summer, sponsored by Denise Van Outen and a Hollyoaks actress, who joined us on the walk. It was an amazing day especially as I got to meet others with vitiligo whilst fundraising and donating to a good cause.

Please consider making a #GivingTuesday donation to help The Vitiligo Society further in our goals for 2020 and beyond >>

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: ZebedeeMan

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.

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

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