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My journey with vitiligo: despair, acceptance and becoming a trustee

I have had vitiligo for the last 15 years. After suffering from eczema and psoriasis as a child and teenager, vitiligo first appeared as a small patch near my left eye. This then steadily progressed over the next few years until roughly 95% of my skin had lost its pigment. My progression to almost complete pigment loss was very difficult as I had lots of patches all over my body for a 3-year period which was highly noticeable. I was 19 years old and at university when it started, so as a self-conscious teenager I found this exceptionally difficult to cope with.

After diagnosis, I was provided with a corticosteroid cream (Dermovate) by my GP. This had no impact at all so after a few weeks I stopped using it to avoid any unwanted side effects. It was then that I started to feel quite desperate. My family has a history of skin conditions on my mother’s side, but never vitiligo before. My GP then referred me to the dermatology department at Guy’s and St Thomas’ Hospital in London where photographs of my entire body were taken as a reference point (sounds a bit strange now) and it was suggested that I try UVB light therapy. I made a personal decision that it wasn’t for me however I do appreciate that for many others in our community this treatment has worked and stimulated re-pigmentation to a greater or lesser degree. After discussing with my family, considering the vast scale of treatment required against the potential risks I decided not to pursue it. I did try camouflage make-up on my hands and face which was my only option, given the self-tanning market didn’t have the scale or quality of products, compared to today. The products I did try left my skin more orange than tanned so I gave up.

Reflecting now, this became the time I refer to as my ‘lost decade’. I hated my skin, and myself by association. Why did I have to be so different in a weird way? Literally no one else I knew had the same skin condition. I struggled with confidence and low self-esteem at the best of times, and this just seemed wicked and cruel. I had no coping mechanism or witty retort when someone noticed and didn’t know how to manage unkind remarks such as ‘ghost’ or ‘milk bottle’. It made life incredibly difficult. 

I always found my vitiligo so difficult to explain. Summer was the worst time. At least during winter everyone else was a bit paler too. When I’d return home from a hot country, friends would often innocently make comments without thinking. This made me feel extremely embarrassed and often made me feel lost for words. I used to love the beach but I started to avoid meeting friends there. I’d avoid wearing sunscreen as a form of ‘protest’ as I hadn’t really needed it much before. Getting sunburnt sometimes provided a short relief from my pale skin as it was a ‘nice’ shade of red! All of this is utterly irrational but I can see now that it was part of my journey towards self acceptance.

Today, the only pigment I have left is on my face except for two large circles around my eyes. This is often mistaken for a ‘sunglasses tan’. I do have a small patch of pigment on my lower leg which actually tans very well! A more recent development has been patches on my scalp and in my moustache (if I grew one), turning the hair colour white. It wasn’t until quite recently that I was able to come to terms with my vitiligo and stopped feeling embarrassed. This has been after almost 15 years of hiding from it, not being able to talk about it with others and often feeling inferior.

Since I’ve started to ‘own’ my vitiligo, talk about it openly and not feel embarrassed to wear a t-shirt through fear of comments or stares, it has been liberating. I’ve found that even though most people haven’t heard of vitiligo, they either do not care that my skin is paler than theirs or hadn’t really noticed. Everyone I speak to is supportive and kind. Talking to people about my vitiligo has made me feel each person is then an ally, and that I can really relax around them, which is something I haven’t been able to do since I developed vitiligo.

So, what helped me turn the corner in my journey towards self acceptance? In December 2018, I was very lucky to have been able to travel the world with my wife after we took sabbaticals from our jobs. We spent 5 months travelling around Australia, New Zealand and South America. Our travels put my vitiligo on centre stage as I met lots of new people, and my skin tone was obviously different to most other people’s golden tans. It became a type of ‘immersion therapy’ and an opportunity to confidently have conversations with strangers who noticed or asked about my skin. There is no way I would have been able to do this when I first started to develop vitiligo 15 years ago, and to be honest not even a year ago.

Travelling was a very humbling experience. I already knew that I lived in a ‘bubble’ back in the UK but I really had no idea. The number of happy, kind and generous people I met, particularly in South America, who have a fraction of what most of us take for granted really resonated with me. It made me realise that there are a million people who would happily swap their problems for mine. I know it’s a cliché but travelling really did broaden my mind. It made me realise how fortunate I am and that the very least I can do is help others in any way that I’m able. 

My experiences during my travels and how I felt about my skin when I returned home, lit a fire in me. I felt really empowered and realised I no longer felt embarrassed who I was. It was an incredible feeling. It has transformed me into a more confident, driven and happy person. But I also felt a sense of loss at the amount of time it had taken me to arrive at this place. I resolved to do something about this and decided to help others who are struggling to come to terms with vitiligo. I want others to love the skin they’re in a lot faster than I learned to love mine.

I first got in touch with the Vitiligo Society when I returned home in April 2019.  I joined as a member and also offered my services to support the society in any way that I could.  Shortly afterwards, I had a great conversation with Eyal and then also met the other trustees, Marco, Natalie and Simon at their offices in Victoria.  I was absolutely delighted to be invited to join the board of trustees and be part of this fantastic team. The passion and dedication of the trustees I have seen in my short time so far is truly inspiring.  

I have 12 years experience in HR roles gained in the investment banking and energy sectors.  I am looking forward to dedicating time and effort to the Society to help us grow and raise awareness of vitiligo. With a number of exciting projects on the horizon, I can’t wait to see what the rest of 2019 and beyond will bring.

Thanks for reading!

Why World Vitiligo Day made me realise I’d reached a new level of self acceptance

I started writing this feature for The VitLife at George Bush International Airport just after 8pm on Sunday 23rd June. I was feeling a mix of emotions as I waited in the airport lounge reflecting on the events from the weekend. I scribbled down as much as I could in my notebook through fear of forgetting anything important by the time I landed in London. I’d learnt so much in 72 hours and I wanted to make sure the best of what I learnt was shared here, with our members. 

World Vitiligo Day as a celebration in the US, is now in its fourth year. In 2016 it was hosted in Washington DC, followed by Detroit in 2017, Boston in 2018 and this year, Houston made its way onto the map as the fourth state to welcome guests from various parts of the globe. As it moves to each state, so does the vitiligo support group that hosts it. This year it was the turn of the Houston Vitiligo Awareness Group, a support group set up in 2016 by Diane Wilkes Tribitt, who was keen to make a difference with those living with vitiligo within her community.

Registration for the event opened at 3pm on Friday 21st June and was an opportunity for guests to collect their vitiligo weekend goodie bag and the official event t-shirt with the customised message ‘The Vitiligo Journey – Healing Starts With Me’. After I’d registered and collected my name badge we had a few hours spare, so I decided to wander around Sugarland absorbing the Texan heat (of course, I’d applied factor 50 sun cream to protect my skin!), checking out the mostly boutique shops, bars and restaurants before a quick stop in Starbucks before heading back to the conference venue for 6:30pm.

Back at the Marriott Hotel an influx of guests had arrived in the few hours I’d spent wandering around the City. In the main room, the DJ had been warming up the guests with the latest tunes as many started to take their seats ready for the first session of the evening. Admittedly, I did feel a little anxious as I took my seat a few rows back from the front, simply because I didn’t know anyone and it just felt like everyone else had met each other before and had been friends for years! Watching the guests mingle, introduce themselves and having conversations amongst each other, was a sure sign of just how friendly everyone was.

Dressed in their shorts and t-shirts with their skin proudly on show, kids played on the dance floor like they were school friends who saw each other daily. The truth was, most people hadn’t met before or hadn’t seen or spoken to each for 12 months.  I played close attention to what was happening in the room, which started to give me a really good feeling about the entire weekend. There was an incredible energy and I suddenly became excited about who I was going to meet and what I was going to learn over the next 72 hours. 

It wasn’t long before a lovely lady approached me and asked if she could take a seat next to me. We got chatting straight away. I sensed she had been before and I wasn’t wrong. She beamed when she spoke about the first time she had attended in 2017. She told me the entire weekend would be life changing and that there is a real sense of togetherness, almost like everyone is family. Turns out she wasn’t wrong. Naturally we started talking about our own experiences with vitiligo – when it had started, experiences with what we thought had triggered it and being around others with the condition. Vitiligo was naturally an instant conversation starter. It was like we couldn’t wait to exchange stories to see just how much our lives crossed and where our journeys differed. It became a common theme throughout the weekend, the conversation heavily focused on how vitiligo has truly made us feel. 

Shortly after 7pm, FOX News Presenter, Lee Thomas arrived on stage. With his usual humour, wit and bubbly personality (you may remember Lee was our guest of honour at our vitiligo Society open day last year), Lee was someone the entire audience instantly warmed too. After a brief intro, the lights dimmed down and a video clip was played which touched on Lee’s own story as a public figure with vitiligo, as well as an emotional recap of the 2018 conference in Boston. The touching clip also shared images from the different support groups globally and was a moving reminder as to why the three-day conference is such an important event for the vitiligo community.  

After the video, there was opportunity to recognise groups such as the Minnesota Vitifriends Support Group, The North Carolina Support Group and Pen Pal Patch, as groups that had made a difference and unified those with vitiligo. A representative from each group took their position on stage, including myself as a representative of the vitiligo Society. After photos, the fun began as the event hosts appeared on stage in matching purple tutu’s which was an indication that amongst the updates, presentations and workshops, the weekend was also about having fun and what better way to begin by hitting the dancefloor and practicing a few well known Texan dance routines! 

Just after 10pm, everyone gathered for the evening session. The guys headed to a meeting room for a session called ‘Iron Sharpens Iron’, whilst the women had a separate session called ‘Survivors’ – a greatly titled session that was synonymous with exactly what these women were. The ladies session was an open forum for us to talk about our experiences and as I expected there was no holding back!  We discussed everything from makeup (one girl shared her experiences with a makeup artist from Sephora who suggested she cover the spots on her face), to dating to touching stories where some women had reached their moment of self-acceptance. The session finished at midnight and whilst it had been a long day, I can honestly say I left the hotel feeling enlightened, very welcomed and completely ready for Saturday’s agenda…

Day 2: New treatments, controversial conversations and touching moments….

My alarm went off at 6am. I felt like I’d had around 3 hours sleep as I hit the snooze button on my phone an embarrassing number of times. Of all the days, this was going to be the most informative, educational and the most intense and so I needed to make sure I was up and ready for the 8am start. 

In Houston, the heat is intense from as early as 7am. In fact, it was around 34 degrees when I emerged from the hotel ready to book an uber to the conference. Wearing my purple vitiligo T-shirt, I loved that the messaging was noticeable for others to see. It was a great conversation starter as hotel staff asked me why I was in Houston and what the message on my t-shirt meant. It made me realise just how many barriers are broken when people just ask the question ‘what is that on your skin’ and just how comfortable I was answering those questions that make people curious. 

I arrived at the Marriott hotel just in time for the group photo. The iconic photo, which was to be taken outside the Sugarland town hall by Rick Guidotti, an award winning photographer and Ted X speaker, included the entire group dressed in their purple t-shirts. Trying to organise over 300 people including children, of course came with its challenges, but we pulled it off with almost everyone looking towards the lens after a quick Mexican wave. 

We made our way back across the square to the hotel ready to start the conference. After a welcome speech by Diane Tribitt from the HVAM, we heard from Dr llteft and Vicki Tiahrt who, aside from being major sponsors of the event, gave an update on the work carried out by the Global Vitiligo Foundation, followed by Dr Pandya who gave a presentation on new therapies and treatment during the early stages of vitiligo and why you shouldn’t mix current treatments with Ayurvedic medicine. He also spoke about the use of Jak Inhibitors, which can reduce immune responses and lead to improvements in autoimmune conditions such as vitiligo. An interesting part of his presentation was when he spoke about reducing the triggers of vitiligo i.e. avoiding trauma to the skin, reducing an immune attack on the skin and how to increase melanocytes and melanin production (phototherapy, skin grafts and cellular grafts). Next to share his insights into treatment, was Dr John Harris, one of the worlds leading specialists on vitiligo. Dr Harris shared the results of Incyte’s clinical trials, a two-year long study in which patients tested a topical cream called Ruxolintinib (which is part of JAK inhibitors group of medicines) and which could potentially reverse vitiligo. Well respected, Dr Pearl Grimes, a Dermatologist and Director of The vitiligo & Pigmentation Institute of Southern California, spoke about coping after diagnosis and how to manage vitiligo emotionally. Dr Grimes also highlighted the five stages of grief, which included denial, anger, bargaining, depression and acceptance, which is believed are the stages those with vitiligo will often pass through. For me, in that moment of listening, it felt like a ‘light bulb’ moment as I recognised and reflected on how those stages had passed through my life and finally lead me towards my current state of acceptance. 

Just after 1pm, everyone gathered in the conference breakout area, spilling into the outside terrace so that they could enjoy the glorious weather. Chosen photographer, Rick Guidotti floated around with charm, capturing moments as people casually chatted with one another, laughed and spoke about what they’d learnt so far. A light lunch was served followed by soft drinks and copious amounts of tea and coffee much to everyone’s delight! 

There was a lot to get through, so once lunch had finished we made our way swiftly back to the conference room for the afternoon sessions which included Dr Alanna Bree (emotional and spiritual wellbeing of children with vitiligo), Dr Lisa Schuster (The Psychosocial impact of vitiligo) and the community forum which I had the pleasure of being part of. The panel session, moderated by Lee Thomas and Erika Page from Living Dappled, was a great way for the panel and audience to openly share their experiences. 

One of the most controversial topics often discussed is whether vitiligo is considered a disease of skin condition. Many feel offended by the term disease because it suggests that vitiligo is contagious and it just sounds like a rather ‘harsh’ way to refer to vitiligo, but after much discussion around individual preference we had to accept that how vitiligo is defined is down to one very important factor; funding. In the US, in order to receive funding for research and ultimately a cure, vitiligo needs to be referred to as a disease. By not calling vitiligo a disease would mean there would be no financial backing by the government or healthcare system. Also discussed was the effects of bullying and our thoughts on camouflage makeup, whilst Erika shared how she finally plucked up the courage to clear her shelf full of fake tan bottles and live a life without daily application of self tan. The session, which lasted just over an hour was incredibly interactive and engaging and revealed some really interesting points around the many themes surrounding vitiligo. 

Probably one of the most touching moments during the entire weekend was the moving story shared by Vivian, a lovely lady who had attended the event as her first association with others with vitiligo. She had developed her first patch just under 12 months prior and most surprisingly she was a women in her eighties, which is a very rare age in which to develop the condition.  She had never been to a global conference before yet she gracefully opened her heart and shared her touching story about how it felt seeing that very first patch appear and how it made her feel. She truly touched everyone’s hearts especially when she mentioned how relieved and empowered she felt being around so many positive and open people who she now shared something in common with. She received a standing ovation for her bravery to share and it ended up being a poignant moment that represented the strength of ‘togetherness’ throughout the entire weekend. 

In the evening we brought out our inner 70’s soul as we dressed in our psychedelic colours and platform shoes for the 70’s themed party. This was a chance for us to really let our hair down after a long and insightful day. The evening proceeded with the usual mingling as guests arrived and commented on each other’s attire, before we took our seats at a table and enjoyed a lovely three-course meal.  Shortly after, the tables were cleared, the DJ stand was ready and we were all up dancing to the likes of Michael Jackson, Prince and of course Beyonce! I won’t reveal how late the party went on until, but it was a great night, the biggest highlight being when Dr John Harris, Dr Pandya and Dr Pearl Grime took to the dance floor and performed a routine to Good Times by 70’s group Chic. Doctors that dance…who would have thought it! 

Day 3: Emotional Goodbyes

Day 3, the final day of the conference started slowly. I could really feel a sadness in the air as it was the realisation that it was the last day….the final few hours before all the attendees would be making the journeys back home. For some it was a short drive home, maybe just a few hours, whereas for the majority, it was a flight back to an entirely different state, or in my case, country. The morning started with a presentation from Rick Guidotti, the founder of Positive Exposure, a charity which celebrates and utilizes the beauty of human diversity. Rick, who had spent the weekend capturing tender moments of the conference as the official photographer, spoke about and shared a number of touching portraits and videos of children and adults with conditions, that he’d had the pleasure of working with before. Following the presentation from Rick, there was a ‘Meet the Doctors’ panel discussion, an introduction of social interaction skills training’ session with Dr Lisa Schuster and Andrea Tan and closing remarks as the event came to a close. All that was left to do, just after 12pm was reveal next year’s location for the event. There was a lot of anticipation, as guests couldn’t wait to hear. There had been much speculation over the weekend, with a lot of second guesses at where it could possibly be. I couldn’t wait to hear and already knew that wherever it was, I’d be flying over for it. As Alicia Roufs took to the stage it was announced that the VITIFriends Vitiligo Support Group in Minnesota were going to be the next hosting city to which the crowd stood and clapped at its announcement.

Following the final announcement, all that was left after an incredible and insightful weekend was to say goodbye to all those I’d met, spoken to, shared stories with and simply been present with. For me, attending the World Vitiligo Conference was life changing and now that I’m back in London, I know that the memories I have brought back with me will be long lasting. Coming back made me realise that I’m still learning about vitiligo. Learning about others with vitiligo and how it makes them feel. Since I’ve been back I’ve met and spoken to three people with vitiligo. The first person I bumped into near where I worked, I noticed he had vitiligo on his face and went straight up to him and had a conversation for 10 minutes. A week later I was in Europe and the hotel barman had vitiligo. I didn’t notice it straight away, but after having a conversation with him and noticing a few small spots on his hands, I felt compelled to ask if he had vitiligo, which he did. The third person was in the airport, she noticed mine first and as soon as she brought it to my attention, we couldn’t stop chatting about our experiences. Those separate experiences made me realise that we do want to talk. That we can be open and that it’s no longer an awkward conversation. We want to notice vitiligo on each other and have a conversation around what it’s like growing up with the condition. vitiligo creates that instant bond. An instant conversation starter that allows us to learn about each other. Times have changed since I was a little girl when having a skin condition was a taboo subject. Now we want to talk. We want to be open and we want others to listen and learn…

I started to re-pigment within 2 weeks – Joel Pimm

Joel Pimm, from Bristol, developed Vitiligo when he was 20 years old. Concerned that his skin was suddenly changing colour, Joel’s natural response was to contact his Doctor in hope that he would find out why there were patches forming on his skin. The response from his Doctor wasn’t surprising as it is one which many of us have heard before. He was simply told to ‘live with it’ as there was currently no cure for Vitiligo.  

Now in his 30’s and having tried various forms of treatment, in August 2018 Joel invested in a home UVB lamp which he says significantly changed the Vitiligo on his skin. In this interview, we spoke to Joel about the UVB lamp, its benefits and how going through treatment has made him feel… 

Where did your first patch appear and were you diagnosed straight away?

I first noticed a white patch in my groin and went to my Doctor who treated me for a fungal infection. Various tablets and lotions were used; however, the white patch remained. One day I got badly sunburned and then noticed another white patch appear on my chest. I went back to my Doctor who then referred me to a dermatologist who diagnosed me with Vitiligo. Since then Vitiligo has continued to progressively spread all over my body.

Did you find it difficult accepting you had Vitiligo?

I did struggle in accepting that I had Vitiligo. I was a very social person, always outside, however, over the years I rarely ventured outside and tried to avoid events where I had to be social. 

What types of treatment did you try?

At the time of my diagnosis in 2005 the only available treatments were: camouflage makeup, topical steroid creams, UVB and skin lightening agents. I was refused both topical steroid creams and UVB treatment and was told to “live with it”. As my Vitiligo was spreading fairly rapidly I decided to apply monobenzone to my skin through the NHS. For around 10 years I lived with de-pigmented skin and according to those closest to me, I didn’t have Vitiligo. However, it took a lot of maintenance, as my body would gain pigment, particularly on my arms, hands and face. I also grew tired of always avoiding the sun and not enjoying time outside with my family. It was only in summer 2018 that I decided to make an effort to spend more time outdoors and to see whether it stimulated any further skin re-pigmentation. To my amazement parts of my skin started to re-pigment fairly quickly. As a result, after consultation, I bought a UVB panel for my home.

You started using a UVB Lamp as a form of treatment at home in August 2018. What made you decide on trying this type of treatment?

I had heard and seen several success stories around skin re-pigmentation when using the UVB lamp. Given that I had never used this treatment before, and my skin had naturally started to re-pigment, I thought it would be worth trying. 

How did you hear about the treatment?

Various scientific papers, social media and speaking to other people with Vitiligo and also through the Vitiligo Society.

Were you made aware of the risks associated with UVB Narrowband treatment (if any)?

Yes, I’m lucky that a member of my family is a GP, so I was made me aware of the potential risks.

Have you experienced any complications with the treatment? (For e.g. burning of the skin, bad reactions)

At the beginning of my treatment I did burn myself badly, however, this was an error on my part, as I’d stayed under the panel for too long. The light is relatively intense so the skin can burn very easily. Other than that I haven’t had any complications.

Can you describe the process (i.e. how many times a week you go, what exactly it involves).

I would use the UVB panel three times a week alongside consumption of various vitamins e.g. Folic acid, Vitamin B12, Gingko Biloba and other antioxidants.

How quickly did you start seeing results?

I began to experience re-pigmentation within 2 weeks of UVB treatment.

How has having the treatment made you feel about yourself? 

I have been overwhelmed by how well I have reacted to UVB treatment. However, on the other hand I am also trying to come to terms with the fact that my Vitiligo is now visible whereas before treatment it wasn’t. Despite this, I am glad that I decided to use UVB treatment as a way to stimulate repigmention in my skin and am confident that when alternative treatments are available, my skin will hopefully react positively to any further treatments that I might use. 

Would you recommend the treatment to others?

If people have not tried UVB treatment I would definitely recommend it. I do however; understand that UVB treatment is not available to all and not suitable to everyone who has Vitiligo.  

What message do you have for others living with Vitiligo? 

To this day I regret using monobenzone to help re-pigment my skin, however, at the time I didn’t have the knowledge or understanding about Vitiligo as I do now. Organisations such as the Vitiligo Society have helped me greatly to gain a better understanding of Vitiligo, alongside the importance of nutrition and the development of new treatments. I’ve learnt that it’s a great advantage to talk to those who also have Vitiligo and one of the strongest forms of unity is that we can now talk to each other. Attending events such as the annual Vitiligo Society open day helped me make contact with other people with Vitiligo and gave me the opportunity to ask questions and speak to medical experts within Dermatology. I do not believe there is “no cure” for Vitiligo and fully believe that one day (hopefully soon) there will be a breakthrough treatment that will help benefit those who are keen to re-pigment. I hope that my story illustrates the effectiveness of available treatments in skin re-pigmentation.

News

Zebedee Management are on the lookout for new models with vitiligo

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

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

Shankar, a model with vitiligo 

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

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

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

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

apply2zebedee@gmail.com 

Website: www.ZebedeeManagement.co.uk 

Our awareness campaigns blog: 

Twitter: 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.

A magnificent seven. Volunteers needed!

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

What is involved?

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

Make a difference

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

How to apply

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

The roles in more detail

The seven roles are described in more detail below.

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

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

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

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

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

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

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

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

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

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

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

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

Skin PATCH survey results

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

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

The Idea Behind the Survey

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

Preparations for the Survey

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

Starting the Survey

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

Results 1: Medical History Outcomes

Diabetes and Thyroid

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

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

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

Other Medical Histories Outcomes

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

Conclusion

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

Results 2:  The Effects  Of  Hand-Washing

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

Conclusion:

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

Results 3:  Usability

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

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

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

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

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

Results 4:  Durability

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

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

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

New article on vitiligo published in the Lancet

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

Download the article

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