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    Vitiligo

    What it means when you are ready to love yourself with vitiligo

    As a woman who has lived with vitiligo for over 30 years, I am all to familiar with the emotions we often go through with a skin condition as visible as ours. For me, it feels like it was just a few months ago, where, if there was a magic wand that would cleanse me of vitiligo, I would have happily taken it, just so I could blend in and make my life easier. As a teen and young woman it was difficult for me to visualise accepting myself. Visualise ever loving my skin and appreciating that being different is just as valid as someone who doesn’t have a visible difference.

    When I appeared on London Live in 2013, I had no idea the impact those 8 minutes of live TV would have on my life, personally. The doors it would open, the opportunities it would create and most importantly the voice it would give me that would allow me accept my skin and open up to those around me. From that very moment, the direction i’d been walking in suddenly changed and the new journey I was about to embark on, became one of positivity and self acceptance. It was one where I had made a commitment to myself to change.

    When you make a commitment to yourself there are a number of things you likely would have done to reach that mindset of visualising change. They might not seem like very big things, but I can assure you they are! Here are those actions you will have taken when you decided you were ready to love yourself with vitiligo….

    You made a commitment to change your mindset

    When I realised that trying to conform to the idea of perfection in a world where women come in various sizes, skin tones and shapes was not only draining but unrealistic, I made a commitment to myself that I needed to shift my mindset and focus on looking at myself as a whole. I knew it wasn’t going to be easy and I knew it wasn’t going to happen in 24 hours, but by making a commitment that started with changing my mindset, it meant that I was promising myself that I would change in a time period that worked for me.

    I can’t stress enough, the importance of a healthy mindset. Your mindset is a set of beliefs that affect how you think, feel and behave and in relation to vitiligo, my mindset was unhealthy. During my teenage years, which were my most difficult, I had created a collection of beliefs about my skin that were effectively poisoning my mind. These beliefs were completely acceptable given the images I was exposed to and the fact I didn’t know anyone else with the condition, but they weren’t the beliefs I wanted to have 20 years later.

    Changing your mindset means refocusing where your mind channels its energy and looking deeper than what’s on the surface. Taking the intense focus away from what your body looks like in the visual sense and thinking about it in terms of physicality and the incredible things it does for you on a daily basis. For me, learning to broaden my mind made me truly understand that my skin is a tiny fraction of who I am, and that I am a whole ‘picture’ with plenty of ‘colour’ and not just on my skin! Changing your mindset is the first commitment you can make to yourself that will drive you towards loving and accepting your skin.

    You have taken a big step forward….probably bigger than you realise…

    Deciding to self-accept when its something that has been a challenge for you in the past, is not only a nerve wracking step, but an incredibly positive one! I know it was for me. For many years I lived in denial. Pretended like I didn’t have vitiligo to the outside world, but was heavily aware of it when I was behind closed doors. I avoided questions, felt hugely offended if people stared and covered up as much as I could with fake tan. I was even convinced that one day I’d either wake up and my entire life with it had been a dream or that a miracle cure would be discovered by Dermatologists which would be my way out of this tormented life I felt I had with the condition.

    In order to start your journey, it’s important that you focus on accepting your skin the way it is, in all its glory. Every single patch you have, the hidden patches and those that people will notice straight away, give them love! Accept that there was a reason why you developed your first ever patch. Maybe it’s a sign of something you went through that you can now look back on in a positive way. My first patch at the age of three developed because it was supposed to. That’s all I can say. I wasn’t stressed. I hadn’t fallen over and there was no one else in my family with it. I often asked myself ‘why doesn’t my sister have any patches’? or Why was I the sibling that developed this?’, but the truth is, she wasn’t supposed to get it and I was. Once I had accepted my fate, I knew that I had taken the first step towards creating a positive mindset.

    You are making a choice and choosing the thoughts that enter your mind

    I knew that I needed to create a filter that welcomed positive thoughts and images and blocked out those that didn’t serve a purpose. But, how do we do that when we can’t control what we see? I was (and still am!) a very frequent user of social media, which means I see thousands of images daily. I practically read every single woman’s magazine on the shelves (the UK has many!), and love fashion and beauty. This meant I was constantly consuming images of woman with perfect skin, body shapes I secretly wished I had and even wardrobes I wished I owned! Its these types of images that are hard to escape therefore its important that you allow yourself to ACCEPT these images as images and not allow them to make you feel inferior. We are prone to using filters, photo editing apps and other magical tools that stretch our waist or remove pimples on our skin, so just remember, we are seeing people’s best pictures online and around us, that have often been manipulated.

    I hear all the time about women and girls who have developed a complex because they’ve seen an influencer with spotless skin or the perfect shaped body and its not healthy. It saddens me that theses images can affect how we feel about ourselves. I would strongly suggest if these feelings are present when you scroll, unfollow those accounts on social media that are making you feel bad and come back to them a bit later because right now, they aren’t serving you any purpose. I do look at other women and see beauty, but I don’t let them alter how I feel about myself because I’m beautiful too! (and so are you!).

    You are ready to share who you are as someone with vitiligo

    During my teenage years and early twenties, I struggled to be true to myself because I spent a lot of time comparing myself to others whilst trying to fit in. In fact studies have shown that comparing ourselves unfavourably to others can seriously affect our mood, increase chances of depression and reveal feelings of inadequacy. We all have parts of our personality or physical flaws or imperfections we want to hide because we don’t want to show our ‘real selves’, that’s very normal. The reason for this is because we fear how others will respond to us. But what if we removed ‘others’ from the equation? Does that mean we’d have more love for ourselves and not see our imperfections as being imperfect? Imagine the freedom we would feel knowing that we can be ourselves. It’s a feeling I know is already making you smile! When I started to talk more openly about my skin and welcomed questions from others, it meant I was ready to be honest with myself. It was a feeling that I wanted to welcome because it meant that I could observe myself and my surroundings with clarity and be my most authentic self. Embracing our authentic selves is the only way you can fully feel like ‘you’ and by being ‘you’ it allows you to connect and inspire others. It also allows you to welcome a set of values that represent who you are and ultimately, allows you to live them. Being open meant that I was able to enjoy being on the beach, leave the house without makeup and look in the mirror and see someone with a skin condition that she loved. Sharing myself meant that I was giving everyone the best version of me. It’s a feeling that I now know, satisfies me the most…..

    Are you ready to love yourself with vitiligo? I hope so……

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    Looking for Love? Why vitiligo shouldn’t come between you and your date

    I’ve often found as I’ve spoken to more people with vitiligo, the subject of dating can be a pretty taboo subject. Its one of those subjects that creates a lot of discussion, divided opinion and for some, can arouse feelings of sensitivity, as thoughts of feeling comfortable and showing a potential partner our skin, can leave us feeling a little anxious.

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

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

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

    Does vitiligo need an introduction?

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

    We are responsible for our own happiness

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

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

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

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

    Confidence is an incredibly attractive quality

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

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

    STOP with the assumptions

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

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

    Lastly, make a promise to yourself….

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

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

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

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    My Top 2019 Moments

    Of all the posts I write throughout the year, the ‘end of year’ reflection post is by far one of my favourites to write because it means I get to reflect over the good and the bad of the past 12 months and give some thought to what I learnt and what changes I’ll be making in the New Year. 2019 has been kind to me. I feel very fortunate. I’ve been presented with some great opportunities in relation to sharing my story and making a small impact in the space I’ve been given and in parallel, feel as though I’ve really worked on developing myself and ensuring I’m completely at peace with my body in every way. So, lets start reflecting! Here are my best bits from 2019!

    A PHOTOSHOOT PUBLISHED IN 28 COUNTRIES

    The year started with a photoshoot in Amsterdam. I was incredibly excited about this particular shoot because, not only did it mean travelling to another city and squeezing in a quick getaway with Mum, but it meant working with a photographer that wasn’t London based, which, in a way gave the shoot a fresh new perspective.

    In 2018, Haarlem based photographer Elisabeth Van Aalderen commissioned a project called ‘Shades of Pale’, which aimed to celebrate the uniqueness of vitiligo and fully appreciate the beauty of those affected by the condition. What made this project even more personal for Elisabeth is that she also has the condition and was keen to weave vitiligo into her passion for photography.

    It was Living Dappled, a blog for women and girls with vitiligo, that made me aware of the project and given I was planning to visit Amsterdam and it was it a short trip from the UK, I decided to reach out to Elizabeth.

    I loved every second of the shoot, which took place in a loft apartment style studio in Harleem.  Elisabeth was incredibly creative with her ideas and I loved that her vision was to create very soft, natural shots with nude tones that would project a very feminine outcome.

    For me, these photos represented openness, femininity, elegance and the freedom to show my skin, allowing it to be captured in the most beautiful way. By far, the best set of photos in my collection since starting this journey…

    WORLD VITILIGO DAY

    One of my biggest highlights of the year was attending my first ever World Vitiligo Day conference. I’d been wanting to attend ever since the first conference in Washington in 2016 but because it was in the US, it wasn’t so easy to hop on a plane and take time out from work for 5 days! But this year, I decided I was going to make the trip regardless of where it was, and this year it was a very hot Houston in Texas!

    Spread across three days, the conference was attended by key names associated with Vitiligo including Doctors, Dermatologists, Health Practitioners and most importantly, those with the condition. It was the first time I’d been to an event where the majority of the attendees had what I had. Looked like me! From the moment I arrived at the Marriott Hotel where it was held, I was overwhelmed, excited, emotional and thankful I was able to be there. Although it was an intense 3 days with a very full agenda of talks, seminars and networking, it was an incredible experience that taught me so much about who we are as a community and as an individual with the condition.

    When I returned to the UK after the conference had finished, I honestly felt as though I’d been shown a completely new perspective, had learnt so much from others and it made me realise just how resilient we are. Definitely a life changing and unforgettable experience for 2019….

    I BECAME A DOVE GIRL!

    I end the year proudly being part of one of my biggest projects yet – an appearance in the latest Dove campaign that celebrates underarm beauty. I’ve seen so many great natural women representing vitiligo in global campaigns that it felt like a true blessing when my turn finally came and I auditioned and was subsequently offered a part a few weeks later. I was over the moon that I was representing women with vitiligo.

    Whilst taking part did feel like I was exposing myself on a more global platform because of the size of Dove, it did feel like the most natural fit in terms of working with them, because it’s a brand I’ve been using for many years. The shoot day itself felt as though it lasted an hour because it was such a great experience being on set, having my makeup done, being styled and of course promoting vitiligo through photos and an interview. I’ve loved seeing the campaign pop up in magazines such as Hello and ES Magazine. I smile every time I see the image of myself looking back at me as I proudly show off my patchy underarms….

    This year has taught me that anything is possible and that sometimes we have to be patient and wait for opportunities. Its been amazing see so many wonderful women with vitiligo appearing in global campaigns where their skin is celebrated – Gillette, CoverGirl and Primark are a few that come to mind. I’ve also learnt that caring less about what people think of you is one of the most freeing feelings ever! Towards the end of this year I started wearing skirts, less layers of fake tan and feeling completely at ease with people glancing over at my legs. Any thoughts of anxiousness have completely disappeared from my mind and it’s liberating. This year has come with new learning’s about myself and opportunities I feel blessed have come my way. I hope 2020 offers the same….

    Lastly, I’d like to wish you the most amazing 2020. Thank you for your continued support, love on my social media and your messages, which are a constant reminder why I do what I do. I hope the New Year brings you many amazing things….

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    Dove celebrates underarm beauty

    In a recent survey commissioned by Dove, it was revealed that 6 in 10 women felt that they had been judged on the appearance of their underarms and 88% of women felt pressure to have the “ideal” underarm – smooth, flawless and blemish free.

    It was for this reason Dove felt strongly about creating a campaign that would not only celebrate underarm beauty, but would remove the stigma and get people talking about societal views on the ‘ideal underarm’.

    Earlier this year, I auditioned for a part in that very campaign that was taking fruition and the most exciting thing happened….I got the part! The purpose of my part, as a woman with vitiligo, was to show just how diverse women’s underarms can be.

    For this campaign, 13 strong women with their own underarm stories came together to prove that you can be confident irrespective of whether you grow your underarm hair, have scars or blemishes, have lasered for years or spray your hair purple (thats what one girl does!) or have vitiligo like myself.

    Filmed in East London, the day itself felt like it flashed by in two hours. I arrived at the studio feeling a mix of emotions – excited, a little nervous and overwhelmed by the fact I had been chosen to represent such a big brand in the personal care world. There were moments when I wanted to pinch myself – like when I was sitting in the makeup chair having my hair and makeup done ready to go on set to film the first few scenes followed by a solo interview where I would talk about my experiences with vitiligo.

    The set was naturally busy with film crew, makeup artists, photographers, camera crew all working tirelessly to get all the footage they needed to create the final piece…and of course 13 incredible women, including myself from different backgrounds ready to empower others to feel confident and comfortable about their underarms.

    Up until when I got the part, i’d never really given my underarms much thought. They were just there! I showed them in the summer and covered them in the winter. They didnt really serve much purpose and I certainly didnt have views on whether I thought they were beautiful or not. However, when this campaign came about and I began to understand the strong feelings people had towards women having ‘hair free’ underarms, I was taken aback. So many people, including men have strong viewpoints on what they should look like! Now, I’ll just put it out there, I shave and have done for years because its my preference. I simply like a smooth underarm. However, I do believe that women should have a choice as to what they do with theres and shouldn’t be judged if they decide they’d rather hold onto their hair and keep it close to their body.

    As most people know, vitiligo is incredibly unpredictable and can spread anywhere, including the underarms and my message in the campaign, was that underarms are beautiful irrespective of what they look like.

    Dove have long been champions of promoting real beauty. In 2004 they launched the ‘real beauty’ initiative, which was advertised worldwide and included workshops, events, videos and extensive promotion in order to show just how beautiful natural women are. It’s a campaign that is still memorable 15 years later and is a reminder of the importance of diversity and widespread beauty. This campaign, which has been launched alongside the hashtag #ArmsUp is an extension of the already existing campaigns that Dove have created using every day, natural women.

    So much goes into creating a campaign of this nature. From the photography, to the interviews to capturing the rights moments on camera, that its hard to comprehend just how hard it is to give everyone screen time and crate a final piece that portrays a strong message. I can honestly say, Dove have done absolute justice with the final piece and I love how they have put the final edit together. The advert itself is upbeat, powerful, fun and really shows a defiant attitude in terms of women making their own choices.

    For me, this was another opportunity to push vitiligo into the mainstream, show others that we are worthy of brand representation and of course, normalising vitiligo for all those people that aren’t used to seeing people like us in the media. This was a huge deal for me. It wasn’t just about turning up and playing the part, it was about me opening up once again, sharing my story and proving to myself that this is just another example of me showing the world that I love the skin I’m in….

     

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    World Vitiligo Day 2019 – The Best Bits

    Just over 6 weeks ago, I flew to Houston, Texas for the 2019 World Vitiligo Day Conference. It was my first time attending the annual event, which takes place in a different US state every year. Held at the Marriott Hotel in Sugarland, a beautiful city southwest of Houston, the conference was attended by just over 300 people including leading doctors, dermatologists, advocates, ambassadors, families and most importantly, those living day to day with the condition. Now in its forth year the conference was hosted by the Houston Vitiligo Awareness Group, a support group set up in 2016 by Diane Wilkes Tribitt. In previous years it has taken place in Washington, Detroit and Boston.

    Below are some of my favourite highlights from the 3 day event that brought the Vitiligo community together….

    Being among 300 people with Vitiligo

    As I packed my suitcase four days before flying out for the conference, thoughts of what it might be like crossed my mind. How many people had registered to attend? Would it be people mostly looking for answers in relation to a cure? Would the main focus be on the talks and presentations by the leading doctors as opposed to those living with the condition? I honestly didn’t know. Looking back and reflecting on the entire three days once I’d got back to London, I realised that its impossible to comprehend what it feels like to be around 300 people that have the same condition as you.

    I arrived at the Marriott Hotel in Sugarland on Friday 22ndJune – the day of registration. As soon as I walked into the hotel, I noticed two children playing by the seating area with Vitiligo and also a man and woman speaking on the sofas. As I queued to ask where the registration desk was, in front of me was another man with Vitiligo. In that quick moment, even though I hadn’t spoken to any of them, I suddenly felt an ‘invisible bond’ as I realised just how amazing it was to see other people with Vitiligo, other people that looked like me.

    Being amongst so many with Vitiligo over the entire weekend was incredibly overwhelming. I loved that everyone was so positive and open about their experiences. Everyone was willing to offer advice, share their stories and support each other, which created a real sense of community and togetherness. I felt as though I was amongst people that not only understood me but could also relate to me. I made so many connections and felt inspired by everyone I had a conversation with. The one thing everyone seemed to have in common was passion. A passion to talk, share and help those around them. It was one of the ‘safest’ spaces I’d been in for a long time that allowed you to talk freely about your feelings, concerns and on some occasions, conversations you might not have had with friends or family in the past.

    Presentations by leading Doctors in the Dermatology field 

    Hearing from the leading Doctors and Dermatologists that specialise in the treatment of vitiligo is significant to why the World Vitiligo Day Conference is so important. Dr John E Harris, Director of vitiligo clinical care and research shared the results of the Incyte clinical trial, 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, whilst Dr Pandya gave a presentation on new therapies and treatment during the early stages of vitiligo and why you shouldn’t mix current treatments with Ayurveda 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). 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.

    Group Photo on the steps of City of Sugarland City Hall

    At around 8am on day 2 of the conference all attendees made their way to Sugarland City Hall for the group photo. Wearing our ‘The Vitiligo Journey – Healing Starts With Me’ customised t-shirts, all 300 attendees gathered on the city hall steps ready to be photographed by award winning photographer, Rick Guidotti. Of course, with so many of us it was likely to take some time to get us all looking at the lens, but we did pretty well, so much so, it turned out to be the iconic image of the entire weekend that quickly made its way around social media. It was a poignant moment that showed unity, togetherness and a community that wholly supports each other. An incredible moment for everyone, with or without Vitiligo. 

    The 70’s themed party where the Doctors proved themselves on the dance floor!

    There’s probably nothing more fun than a themed party and with the 70’s being the inspiration, it was a great opportunity to resurrect our flares, psychedelic colours and afro wigs and let loose to the sounds disco, R&B and funk music. Probably one of the most entertaining moments of the evening (and the entire weekend!) was having Dr John Harris, Dr Amit Pandya and Dr Pearl Grimes join us on the dance floor and show us their smooth moves to 70’s classic ‘Goodtimes’ by Chic. I’ve definitely never experienced ‘dancing doctors’ before but it was a poignant moment which signified, that amongst the research and extensive work they carry out in relation to Vitiligo, they are truly one of us. I hope we see more of that next year!

     The Community Panel

    The community panel session, which I was also part of, alongside some notable Ambassadors was a great opportunity for ‘real talk’ as we discussed a range of topics that are frequently raised as points of discussion amongst the vitiligo community. Moderated by TV Broadcaster, Lee Thomas and Erika Page from Living Dappled, the hour-long session was a great opportunity for open conversation and interaction with the audience. 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 were 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.

    Next year, The Global Vitiligo Foundation in Minnesota will be hosting the 2020 conference. Check out https://www.wvd2020.com for more details.

     

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    Shades of Pale: Vitiligo Project 2019

    Earlier this month I coincided a trip to Amsterdam with a photoshoot with Harleem based and award winning photographer, Elisabeth Van Aalderen who is currently working on a project that aims to closely capture the beauty of Vitiligo.

    It was Living Dappled – a lifestyle blog aimed at women and girls with Vitiligo, that first brought Elisabeth’s work to my attention and given I was planning a weekend break in the City known for its beautiful canals, bike riders and some other stuff I don’t need to mention (!), I was keen to get in contact to see if I could take part. Within a few days, i’d arranged a time to meet Elisabeth to take part in my first shoot outside of the UK.

    As Elisabeth’s first model to be photographed with Vitiligo, I was somewhat nervous but also excited about being photographed outside the ‘comfort of London’. I’d seen some of Elisabeth’s previous work on her website (www.elisabethva.com) and instantly felt drawn to her style of photography which focused on strong, feminine, natural images under the fashion photography umbrella.

    When I arrived at the studio in Javastraat, East of Amsterdam on a pretty wet and miserable day, I Instantly loved the feel of the studio. The natural light, high ceilings and the open space gave me a really nice feeling! For the first 30 minutes over a few cups of coffee, we chatted about the shoot, our own journey’s with Vitiligo and also the mood board’s she’d created, which helped me visualise exactly what type of look Elisabeth was trying to achieve through her photography. I was of course curious as to why she had chosen to focus on Vitiligo, but when noticed we both shared something in common, I understood why ‘I wanted to focus on something that was more personal to me, especially given I too, have the condition’.

    In terms of style, the look was going to be very simple. A mixture of feminine underwear pieces by Swedish brand Monki, cream ribbed bodysuits and oversized ‘boyfriend’ shirts that would create a relaxed look once dressed. Makeup artist, Xiu Yun Yu arrived a short while later ready to transform to give me a fresh glow before being photographed. Xiu Yun Yu used very natural tones with subtle eyeshadow colours, a dusting of pink blusher on my cheeks and a nice layer of my current makeup must-have; a glowy highlighter that had my cheekbones popping!

    Face nicely prepped, I changed into a flattering two piece matching set – the organic cotton triangle bra and matching high waisted ribbed briefs that completed my feminine look and had me ready to start creating images at the hands of Elisabeth’s incredible photography skills.

    I loved every second of the shoot as we created a mixture of close-ups, portraits and full body shots that really honed in on the contrast of my skin. After I had left the studio (the weather still pretty miserable!), I felt empowered by my own ability to show my skin and loved that i’d once again, had pushed a boundary….

     

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    Vitiligo

    4 Ways To Help Your Child Understand Vitiligo

    At what age do you explain to your child that they have Vitiligo? Or do you wait for them to come home from school one day after one of the kids has perhaps asked questions about their skin?

    I don’t ever really remember my parents telling me what Vitiligo was. I vividly remember the endless train journeys to Great Ormond Street Children’s Hospital in London and the play area in the waiting room that kept all the kids quiet until their names were called over the tannoy, but I don’t actually remember when I realised what I was going for or ever asking why I was going! Mum says I questioned my skin when I was around 6 years old. I’d come home from school and apparently one of the kids in my class had asked me what it was, to which I replied ‘I don’t know’…. because I genuinely had no idea. It was then she told me I had a skin condition called Vitiligo and that there was nothing wrong with me. That was the end of it. It was never a hot topic or spoken about again unless someone had brought it to my Mum’s attention….

    As a parent, trying to get your head around Vitiligo or any condition for that matter, can be tough, especially when they are newly diagnosed. So with that in mind, how must it feel for a child to understand the reasons for their slightly unusual skin tone that makes them different from the other kids in the class? Here are the ways, from my own personal experience growing up, how you can help you child understand Vitiligo…

    Explain to them what it is in simple terms

    I know this must sound like I’m stating the obvious, but it can often be difficult trying to explain a condition to a child in simple terms if its not so simple. The key is, try not to over complicate things to quickly! Young children don’t need to understand the technicalities behind Vitiligo, so talking about it being an autoimmune disease and that the loss of pigment is due to the lack of melanin in the skin, isn’t necessary. A child friendly explanation could simply be ‘You have a condition called Vitiligo which means white patches appear on the skin’. All the other stuff can come later in life when they are old enough to understand. When my nephew, who is 8 has asked me what was wrong with my skin, I responded by saying ‘Auntie Nat has a skin condition. It just a little different to yours’, which he accepted and has never felt to ask me again since.

    Show them stories with characters that have indifferences, including Vitiligo

    Back when I was growing up, there were barely any black or mixed race characters in the children’s books I read, so there certainly wasn’t a Naomi or Natasha with Vitiligo! Looking back, I honestly believe this would have helped ‘normalise’ my skin and help me to see it in a positive light.

    Now with books such as Skin Deep: A Childs Story and Snow White and The Seven Patches in which the lead character has Vitiligo, we are able to teach our children through story telling and show them that there are characters in every day life that represent them.

    Remain positive

    I know as a parent you will want to remain positive, but I also understand it can be difficult as you wonder how they are getting on in school or even panicking because you’re not sure how much your child’s Vitiligo will spread. Out of all those people your child comes into contact with, you’re likely the one that will comfort them through difficult times and reassure them if they do face any challenges. My parents always dressed me in shorts and t-shirts during the summer because they refused to have me think that I had something to hide. They always remained positive and hopeful during hospital visits, and didn’t let me think that Vitiligo would stop me from doing the things I loved, such as swimming.

    Banish the Bullshit

    Regardless of your skin colour, religious beliefs, gender or size there is always going to be that kid in the class that spouts negativity! Try and prepare your children for the obvious questions that may arise such as ‘What is it called’? ‘Can you catch it’? (I wish I could banish this question!) and ‘Were you born with it’?. Not only will this allow them to understand their condition, but it will also allow you to dispel any myths that are often associated with Vitiligo, such as it being contagious and stress being a key factor of its cause.

    Since being a trustee at The Vitiligo Society, I often here from parents who have discovered patches on their child’s skin and are often unsure how to deal with their child’s changing skin. I cant stress enough how important it is for you to remain positive, even though their might be occasions when you want to shut the door and shed a tear because you’re not sure what it means in the long term. Try not to worry to much. In all the years I’ve had Vitiligo, I know that having a skin condition in the present time is probably the best time to be different because all around us unique conditions are being celebrated and body confidence has never been so powerful across social media in particular. Remain confident and hopeful for them because if they know you love and support them, chances are they’ll know everyone else will too…

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