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We are building a meditation app for dealing with skin conditions

  • Therapeutic support for dealing with difficult emotions
  • Professionally scripted meditations by certified psychotherapists
  • Choice of different voice overs to suit your taste

You are more than skin deep

Begin your journey

Meet Natalie Ambersley, the vitiligo trustee who got vitiligo at three years old

Most people living with vitiligo remember getting their first spot – and life before it. That wasn’t the case for Natalie Ambersley, a Vitiligo Society trustee and the organization’s social media community lead. Natalie got vitiligo on her arms and legs at just three years old – and doesn’t remember life before the condition.

After her diagnosis, her parents pursued treatment for vitiligo, starting with topical steroid creams and eventually moving on to various tablets and new trials.

“The hospital felt like my second school,” said Natalie, who is from East London. “I would go so often for new creams and so my mum could be informed about new treatments.”

 When nothing worked, her family decided to stop treatments. Natalie was 13 years old and was just beginning to struggle emotionally with the condition.

“It was as a teen that I realized I wasn’t ‘normal,’” said Natalie, who started noticing the differences between herself and her friends. “Flicking through magazines was hard because I never saw anyone that represented me.”

The older she got, the more uncomfortable she felt in her skin. In her twenties, Natalie struggled with the frequent stares and occasionally intrusive questions from strangers. She started experimenting with various foundations to cover the patches and eventually found a fake tanning product that she wore daily to hide the condition.

“I constantly felt self-conscious,” said Natalie, who would avoid wearing shorts and going swimming in the summer because of her fear of being judged. “It severely impacted my confidence and self-esteem.”

In her early 30’s, Natalie decided to try treating her vitiligo again. She had lost 70% of her skin’s pigment and was eager to stop the progression – and get some of her pigment back. After 12 months and 102 sessions of UVB narrowband phototherapy, her vitiligo re-pigmented significantly. Around the same time, Natalie started connecting with the vitiligo community online. Her confidence soared.

“Before social media even existed, I thought I was the only one that had vitiligo,” said Natalie, who credits he online support network as being fundamental to her acceptance of vitiligo. “Seeing so many others embrace their skin has really helped me look at my own in a much more positive light.”

Then in 2013, Natalie spoke on London Live, a national UK news program, about her vitiligo. The response from family and friends was overwhelming and it inspired her to continue sharing her story.  Since then, Natalie has appeared in campaigns with Dove and Vita Liberata and been featured in magazines including Cosmopolitan, Stylist and The Daily Mail. She’s also spoken on BBC Women’s Hour, a radio show in the UK, and appeared on the Victoria Derbyshire Show as part of her work with Changing Faces.

“Sharing my story has helped me to stop shying away from who I am,” said Natalie, who also has a blog and Instagram page called ‘Being Just Us’ where she writes about life with vitiligo. “It’s okay to be different. I want others to know that.”

Today, the East London resident works as an executive assistant for a global telecoms company and enjoys writing, traveling and yoga. She also remains incredibly active in the vitiligo community, supporting social media and VitLife content at the Vitiligo Society and running her own blog about vitiligo, Being Just Us.

“I’m the most comfortable I’ve ever been with vitiligo,” said Natalie, who still has vitiligo on her legs, feet, arms and hands. “I’ve learned to accept myself for who I am.”

Follow her journey on Instagram @being_just_us

How to help your child live with vitiligo

While vitiligo can start at any age, 95% of those with vitiligo develop the condition before the age of 40. As a result, it is not uncommon for children to develop vitiligo and grow up with it. For the parents of children with vitiligo, the experience can just be as emotionally and mentally taxing as for someone living with it.

Lori Mitchell, the author of Different Just Like Me, knows this well. When her own daughter, April, got vitiligo at just eight months old, Lori learned how to help her navigate the social and emotional complexities of the skin condition. Later, she published Different Just Like Me, a book for children celebrating differences, in honor of April’s journey and to help other children living with physical or mental differences.

Here are some of Lori’s tips for helping your child live with vitiligo:

Celebrate your child just as they are

It is important to let your child know that they are okay just the way they are. Lori had pictures of her daughter all over the house – spots and all. She even painted a spot on her back one day to make a snowman out of her spots. April loved it. Finding ways to embrace your child and their skin can help them learn to love their skin too. 

Follow your child’s lead

When April first developed vitiligo, Lori wanted to educate everyone who she caught staring at April’s skin. At times, that made April – who preferred to ignore the stares – uncomfortable. Lori decided to follow her lead. “I tried to take her cues,” said Lori. “I wasn’t always going to be there to “fix” things for April so I wanted her to know she could deal with any situation on her own. I didn’t always want to be the one explaining vitiligo either.” April’s response to questions was often, “It’s called vitiligo, it doesn’t hurt, you can’t catch it and I am just like you.” Lori and April would practice the reply at home every now and then and eventually created cards that had that on it. Lori recommends following your child’s lead to help them feel like they have control of their skin and how they live with it.

Be honest and upfront about the condition

Letting the children and adults that will be around your child with vitiligo know about the condition can remove any mystery and misconceptions. Lori recommends addressing vitiligo and any questions up front with friends or families. “With April, kids just wanted to know that they wouldn’t catch it,” said Lori. “After they were reassured, they played and didn’t give her skin a second thought anymore.” You don’t have to be an expert or have all the answers – you only have to be honest.

Let your child be sad and make space to listen

Living with vitiligo can be difficult, and it is important to recognize that and make space to process it. “If April told me she didn’t like her vitiligo, I would try not to talk her out of it,” said Lori. “I would just listen to her and try to empathize.” The key, said Lori, was to be careful not to agree that vitiligo was “terrible” but instead let April know that she understood how she felt about it. Listen to your child and how they respond to their skin – and make space so they feel listened to and they can process their feelings.

Don’t always put vitiligo first

Vitiligo may be a big part of your – and your child’s life – but it does not have to be the focus. When April was young, she went to a Girl Scout camp in shorts and a t-shirt. Lori was worried about whether anyone would talk about her skin but instead of asking April as soon as she picked her up after camp, she decided to let her daughter bring it up if she wanted and simply asked about her day. Try to find ways to focus on your child as just that – a child who has hobbies and interests outside of their skin.

Join a support group 

Despite vitiligo often being classified as a rare disease, there are millions of other people living with the condition. Over the past decade, online and in-person communities for those with vitiligo have started appearing around the globe. Lori found a support group and pen pals for April to help her meet others who looked just like her. “We had a big map with everyone marked on a flag so she could see how many others with vitiligo were all over the world,” said Lori. You can explore some of the support groups that are available today here.

Find more tips from Lori about how to support your child with vitiligo at https://www.differentjustlikeme.com/blank.  

4 Ways to proactively manage mental health when you live with vitiligo

Let’s get right to it: mental health matters when you live with vitiligo. Why? Although vitiligo is an autoimmune disease with physical symptoms, the social and cultural implications of losing your skin’s pigment can have a significant impact on mental health. It’s not uncommon for those with vitiligo to report experiencing anxiety, depression and lower self-esteem as a result of this condition.

I’ve lived with vitiligo for more than twenty years and know this to be true first-hand. After getting vitiligo at the age of seven, I struggled mentally throughout high school. Despite putting on a smile for everyone else, I was depressed and loathed myself and the way I looked. At one point I thought that I didn’t deserve friends because of the way I looked. “Who would want to be friends with someone who looks like me?” – I would think.

Today, I’ve come a long way mentally and emotionally in my journey with vitiligo. Along the way, I’ve learned that proactively taking care of my mental health is key to living with vitiligo. In fact, managing my mental health has given me the freedom to live happily with this condition. That doesn’t mean that every day is perfect. I still struggle. But investing in things that support my mental health has given me a strong foundation – and a game plan for when things are difficult.

Here’s how I approach mental health care in my own life:

Starting each day with a gratitude journal

Each morning, I start my day with a gratitude journal. A gratitude journal is a record of things for which you are grateful or thankful for. Typically, you keep a gratitude journal by documenting 3-5 things you are thankful for each day. Some of my recent entries include the simply joy of my warm cup of coffee, the opportunity to go for a walk each day and the chance to take some time away from work. The entries can be big or small – but the important part is to make this a daily practice. By consistently starting my day with a focus on the things that I appreciate in my life, I’ve built a habit of looking for the “good” in my day.

Getting 30 minutes of exercise in at least once a day

Most people have a love-hate relationship with exercise – and that includes me. Yet, the difference that 30 minutes of moving my body makes in my day is worth the investment. Exercise is proven to have mood-boosting benefits – and those benefits go a long way to improving my mental health and headspace. While I have a set of workouts I like to move through a few times a week, I most often get exercise by taking a 30-minute walk or bike ride around my neighborhood. Changing my physical space and moving my body not only boosts my mood but reduces my stress levels and helps me approach my day from a place of clarity.

Going to therapy

It’s okay to ask for help. I’ve needed to ask for help more than once in my own life and at these times, I’ve sought out therapy from a licensed professional. The situations that led me to seek out a therapist weren’t about my life with vitiligo. Yet the mental burden I was carrying because of these situations was causing me undue stress around my skin, simply as a side effect. Therapy has been an invaluable way of working through difficult situations and emotions for me. Each session, I would leave feeling a weight lifted from my shoulders. And while life wasn’t perfect after a therapy session, I knew I had a safe space to return to if things felt unmanageable.

Leaning on a vitiligo community

There’s power in knowing that you aren’t alone. The first time I spoke to another woman with vitiligo, I was in my twenties and had been living with vitiligo for more than a decade. I cried tears of relief. I was overwhelmed with the realization that for the first time in my life, I felt like someone understood me. That feeling was transformative and gave me an unexpected amount of confidence in living with vitiligo. Today, I continue to lean on the women with vitiligo in my life that I now call friends. Sharing my story and hearing their own gives me a mental outlet to process this journey in a safe space.

News

The Vitiligo Society coronavirus update

It is with regret that my first communication, as the new Chairperson of The Vitiligo Society, is at such a challenging time. But I felt it was important to introduce myself and share some information on coronavirus and the current understanding in relation to vitiligo. We are here to help support our members and the wider vitiligo community.

The coronavirus and vitiligo

We appreciate that, at this current time, many of us are concerned about the coronavirus pandemic and the potential risks to our health. For those with vitiligo, there may be questions over whether there is any additional cause for concern. We felt that it would be helpful to share some advice from two well-respected vitiligo sources:

Firstly, we would recommend reading the full article by Dr John Harris, from the Vitiligo Research Clinic and Research Centre at UMASS medical school, via the link here.

He summarises:

In most cases, you are not at a higher risk of getting COVID-19 if you have vitiligo. If you are taking medicines for vitiligo and are still concerned about how it may affect you, talk to your doctor. And as we tell everybody, please do your part to prevent the spread of the virus during this pandemic, by washing your hands, not gathering in large groups, and meeting with people over the phone or videoconference instead of in person when possible.

For those treating their vitiligo with drugs and medicines that can have potential immunosuppressive side effects, there is more specific information and advice on the website of the British Association of Dermatologists (BAD) at this link.

Their advice includes the following statement on if you are more at risk but please read their full article for further details:

The BAD is aware of the concerns about COVID-19 amongst people who are taking medicines that affect the immune system. The BAD is not aware of any good evidence that these people are at a greater risk of getting COVID-19 or having a more severe form of the illness. This advice may change as we find out more about this new condition, so please check the Gov.UK and NHS websites regularly.

If there are any updates or further research that we feel is relevant and can support you at this difficult time, we will do our best to share this with you all as soon as possible. 

Government advice

The UK Government is now advising that all practise social-distancing, limiting our interactions with others to an absolute minimum, to help limit the spread of COVID-19.  

Importantly they are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.

This group includes those who are:

aged 70 or older (regardless of medical conditions)under 70 with an underlying health condition.are pregnant 

For full details of the current advice, including health conditions this applies too, please see this link. 

The Vitiligo Society

At the beginning of the year, we closed our physical office in London to reduce our operating costs as part of a Digital Transformation. We implemented technology infrastructure that allowed our staff, volunteers and trustees to work and communicate effectively from anywhere in the world. This has meant that we’ve been able to continue operating effectively under the social distancing guidelines. We will continue to work hard throughout this period to ensure you, our members, are supported and that the wider work of the Society continues as best it can.

We are carefully applying all the government advice to ensure safety, health and support for our staff, volunteers and trustees too. 

Rest assured that we are building a contingency plan for the Society to ensure that we can serve those with vitiligo and deliver the best impact we can in spite of the developing economic climate. 

Please do let us know if you have any further queries in relation to this email or our wider work by emailing us at hello@vitiligosociety.org.

I, along with the Board of Trustees, wish you all the best and good health during these testing times. I’m looking forward to having an open and transparent conversation with you all in the coming months about our work, the changes we are making and how we can further positively change the lives of those with vitiligo.

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.

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