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You are more than skin deep

Begin your journey

5 ways to build confidence when you live with vitiligo

My personal journey with confidence has been long and hard. I’ve struggled with confidence for as long as I can remember, and largely because of my vitiligo, which spread rapidly after I got it at the age of seven. Perhaps the hardest time of year for my confidence is summer, with long, hot days that call for exposed skin and swimsuits.

For many, the idea of summer conjures memories of pool days, sunshine, and tropical vacations. For me, the idea of summer brings flashbacks of crippling anxiety, mental breakdowns, and devastatingly low self-esteem. While my friends were picking out bikinis, I was typically picking excuses to avoid the pool. The idea of my spotted skin being seen by others was enough to have me crying on the floor some days.

After living with vitiligo for more than two decades, I’ve learned a thing or two about confidence – and what tears it down. I believe that confidence is something that must be built – and often takes practice over time. Here are a few practical ways that I work to build confidence in my own life, and actions you can take today to build confidence in your own.

Take small steps towards facing your fears

For years, I was scared to leave my house without wearing a full face of makeup and tanner head to toe to cover my vitiligo. The idea of being seen without either was anxiety-inducing. And yet, one evening, I found myself at the store for a last-minute errand without makeup on. Despite feeling anxious for the five minutes I was in the store, I was proud of myself for facing my fear. A month later, I went to the gym without makeup, and today, I’ve stopped wearing tanner completely. I’m still learning to love my skin, but taking one small step towards facing my fears gave me confidence I never thought was possible. How is your vitiligo holding you back? What small step you can take to facing your fear today?

Build positive thinking habits

The mind is powerful. They say that “you are what you think,” and I’ve found this to be true in my own life. The negative thoughts that play on repeat in my mind can tear down my confidence. It’s important to not only recognize these negative thoughts and re-wire my thinking, but also build habits of positive thinking. I do this by keeping a gratitude journal, also commonly known as a happiness journal. Each morning, I write down three things I’m grateful for in my life. The items on my list are typically small joys – for example, a sunny day the park, a kind gesture from my husband, or time spent with a good friend. The exercise is simple, but the benefits are lifechanging. Over time, I’ve taught my brain to actively look for the good in my life. Do you struggle with negative thinking? How can you carve out time for positive thinking once a day?

Conquer personal goals

I’ve always exercised, but rarely regularly – until last year. My husband and I started going to the gym every other day without fail. We did this for three months straight before we missed a single day. The impact on my confidence was huge. Feeling better about my body and tackling a major goal for myself gave me a huge confident boost. I noticed that I also started feeling more confident about my skin as a result. In other words, accomplishing a personal goal, even though it was unrelated to my skin, helped boost my confidence overall. Do you have a personal goal you’ve been wanting to tackle? No matter the type of goal, boosting confidence in other areas of your life can have unexpected benefits overall.

Surround yourself with body-positive influences

Perhaps one of the most damaging influences on my confidence is comparison. Consuming Instagram or media that worships traditional ‘beauty’ can be mentally taxing and ultimately emotionally damaging to my confidence. As a result, I actively try to surround myself with body-positive influences. On Instagram, I follow people who look like me – others with vitiligo – and influencers and magazines with self-love messages. I also listen to uplifting lifestyle podcasts. The goal is to fill my feed – and my media choices – with images and messages that support confidence building. What type of media are you consuming today? Can you fill your social feed with more body positive role models?

Rebuild your relationship with your reflection

You know what you look like because of a mirror. And yet, mirrors are most often used to critically evaluate our appearances – for example, applying makeup or putting on clothes. I believe this habit can have a negative effect on confidence. You’re looking for “mistakes” and “imperfections” that need to be fixed. When I started working out regularly, the gym I visited had a large wall mirror. Working out in front of the mirror and watching myself love and strengthen my body changed my relationship with my reflection – and boosted my confidence. I started appreciating the way I looked in the mirror, instead of criticizing it. Try writing a positive note on your mirror or giving yourself a compliment every time you see your reflection. Practice this exercise for one week and see what happens to your own confidence.

Credit for all photography used in this article goes to Shawna Simmons

A WVD chat with Natalie Jones, The Skin Coach

https://youtu.be/LndZI-p2rSM

Skin Coach, Natalie Jones joined us for our first-ever Instagram Live on World Vitiligo Day 2020!

As a CBT coach focused on skin, Natalie shared some great lifestyle tips around managing vitiligo, feeling confident during the summer and how to manage feelings of anxiety and stress.

Happy World Vitiligo Day

If you are actively part of the Vitiligo community, you’ll likely have found it hard to avoid all the excitement around World Vitiligo Day (WVD), which is celebrated today, the 25th June. 

Before we divulge into the meaning around WVD, let’s just go back for a moment and consider just how far we have come since the charity was formed in 1985 when vitiligo was virtually unknown. For many of us back then, having the condition was a lonely experience because there were no opportunities to network or attend support groups, like there is today. Often, the only people we would see were those we might briefly pass in the street and even then it was an unwritten rule that you wouldn’t say anything, rather just walk past and quietly acknowledge to yourself that the person had the same skin as you. 

There was very little available in terms of treatment and diagnosis itself was particularly difficult with many GP’s struggling to diagnose patients.  Support services were extremely limited, there was no real drive to raise awareness and of course, there was no such thing as social media. We were merely expected to manage our feelings and emotions solely by ourselves with family around us. Things have changed significantly since then, mostly because of social media and the media interest, which has now given vitiligo a platform. Most importantly for us, we now have a month in the calendar when we celebrate our skin. Since 2011, June has become known as Vitiligo Awareness Month amongst the community. It was in June that year, that the first World Vitiligo Day celebrations took place in Lagos, Nigeria where volunteers, dermatologists, motivational speakers, dancers and patients gathered together with the aim to collectively raise awareness. Since then, the initiative has grown to become a global celebration with events taking place all over the world. 

Officially celebrated on the 25th June, its sole purpose is to widely broaden the importance of raising awareness, educate others and also highlight some of the challenges we often face, such as feelings of isolation and the associated social implications vitiligo can have on us. In addition to the core aims, many people see it as an opportunity to celebrate their skin, which is incredible. 

Celebrating virtually 

This time last year I was in Houston, Texas attending the global Vitiligo conference which takes place in a different state within the USA, every year. My first time attending, it was an event that brought so many people together all with an invested interest in Vitiligo. From Dermatologists, health practitioners, dieticians, influencers and those with family members with the condition, it was 3 days of insightful talks, networking and educating us about topics surrounding the condition. The event itself was overwhelming and in some parts, emotional as people opened their hearts, networked and took a genuine interest in each other’s stories. 

This year’s main event was due to be hosted in Minnesota, but sadly due to the current pandemic, all events have been moved to a virtual platform with global organisations hosting conferences online. The Global Vitiligo Foundation are hosting a free virtual event on Saturday June 27th June with a great line-up of speakers including Dr Amit G Pandaya who is a specialist in Vitiligo, Professor Yan Valle, vitiligo influencer Andre Joachim and Eric Peacock, the co-founder of My Vitiligo Team. We will also be hosting our first Instagram live from 7pm on our Instagram page @vitiligosociety, talking to Natalie Jones, a UK based Skin Coach. 

Why is Vitiligo Awareness Month so important to us?

Firstly, it unites us. Ten years ago there wasn’t for us to unite because social media didn’t exist and the media didn’t cover vitiligo as a topic in the press. Now social media has connected us which means I could be talking to people with vitiligo in the US, Middle East and as far as Australia. Its an emotional thought given this wasn’t possible 10 years ago. 

It’s not just about the 25th June. Whilst World Vitiligo Day is officially celebrated on the 25th June (in commemoration of the passing of Michael Jackson) it has become commonplace for those with Vitiligo to celebrate for the month. From the first of the month, influencers, spokespeople and charities will share content and details of planned events and reach out to those in the community for video contributions. It is a way for us to collectively come together to educate those who have no awareness of the condition or want to learn more if they have recently developed their first patch. For many, it’s the month that gives them the incentive to share that first photo on social media showing their skin having been inspired by others who celebrate their skin. It really is a big deal….!

We feel free enough to share who we are with Vitiligo. I’ve been known to save certain photos for uploading on world vitiligo day. Often these are photosthat leave me with a sense of nervousness because I’m unsure how people will respond to the stark contrast between my dark patches and my white skin. But as with many, I share them anyway, because it’s the month that allows us to celebrate our skin and be proud of who we are a community with vitiligo. 

The vitiligo community, for me is one of the most supportive, most sharing and most inspiring communities to be part of it. Its been a huge part of my personal journey that has lead me to self acceptance and now with a day that celebrates who we are, right now, there is no better time to have a condition as unique as ours. 

Happy World Vitiligo Day.

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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