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Natalie

    Fashion

    HOW I LEARNT TO OWN MY STYLE

    I first realised I’d given myself fashion freedom when I purchased a royal blue bodycon dress from River Island. I remember trying it on in the fitting room, twirling in front of the mirror and thinking to myself ‘this dress doesn’t go with black tights, therefore if I purchase, its nude tights or nothing’. The thought of leaving my house the following Saturday evening without my safety net black tights made feel nervous as a single thought, but I was tired of having a wardrobe that revolved around covering my skin and knew that the next phase for me was getting comfortable and putting myself a little outside my comfort zone….

    I’ll be honest, I felt slightly uncomfortable. For me, nude tights was a new thing. In my paranoid little mind, as I admired myself in front of the full length mirror in the blue dress I ended up purchasing, the white patches on my legs were totally obvious. Forget the fact I was an inch from the mirror, my bedroom lights were brightly beaming and I was fully aware of what my skin looked like underneath the tights. I even had a layer of fake tan on my legs as an added precaution, but still my white patches were showing up through my tights….or so I thought.

    Despite the discomfort, I felt free. I was wearing a dress that that made me feel amazing. It sat comfortably on my knee, was fitted to reveal my petit frame and had some subtle cut outs around the waist just to add a little sexiness. I felt great….

    Rewind time back to my twenties, and my focus when it came to fashion, was to buy anything that disguised my skin. I had endless pairs of skinny jeans, skirts in dark colours that went well with black tights and tops that had long sleeves. I admired the fashion pages in Stylist, Vogue and Elle, but daren’t buy anything that they considered to be on trend, especially if it was revealing. My style was very defined, I wore what I liked and very rarely ventured away from what made me feel comfortable.

    As I entered my thirties, my shopping habits completely changed. I started to focus on the pieces I liked and gave little consideration to how much skin it would cover! Vitiligo took a ‘back seat’ as I started to own my style…here are the lessons I learnt that changed my wardrobe for the better…

    Lesson 1: Don’t dress to blend in.

    I was the ultimate blend in the background chic! I loved nothing more than owning a wardrobe that allowed me to camouflage myself against the crowd because I didn’t want to attract attention or be the one that didn’t get the ‘dress code’ memo. To avoid any hiccups, I’d downplay my choice of outfit. Now, I love experimenting with trends and creatively putting items together that reflect who I am and allow me to freely express myself. Of course, I still consider the setting when im getting ready, but I’m definitely more flexible and give more consideration to what I want to wear rather than what I ‘should’ wear.

    Lesson 2: Embrace being unique

    So… my unique quality is that I have vitiligo, but to me, it wasn’t unique…it was a nuisance. I wanted to keep it a hidden secret, which meant my style was based around keeping it covered.

    My uniform was very much skinny jeans, high necklines, jumpers, shirts with long sleeves and blazers to take my look from day to night. For me, it saved me from stares and if I’m honest…upped my chances of chatting to a guy without having to explain why my arms were partly white and partly mixed. When I decided that I wanted to give myself wardrobe freedom I knew that would also mean changing my mind-set and with that, learning to embrace my skin, because a lot of what I wanted to wear meant revealing my skin.

    Now I love asymmetric tops, bardot tops, cap sleeves and anything strapless. I’ve learnt to wear my clothes, my clothes don’t wear me. I don’t hide behind items that cover me up and when I’m out and ready to whip off my blazer to reveal a lace corset body, I do it with confidence! Part of allowing myself to wear such items was knowing that it was okay to show my skin and now, I can honestly say I don’t even notice people staring because im too busy feeling excited about what I’m wearing. I think sometimes we are so fixated on people looking at us, that we forget to be present. Now im present in every situation and give those around me who aren’t important, no amount of thinking time.

    Lesson 3: Be Confident

    There is nothing worse than wearing something that just isn’t you. Something you brought because the price had been slashed or just because it was an on ‘trend piece’. Wear clothes that excite you, suit you and reflect your personality….and do so with confidence! There is one key thing that I learnt; wearing clothes outside of your comfort zone isn’t about your personal style, it’s about your confidence levels.

    I recall times when I would force myself to wear a t-shirt in the summer. I was never very comfortable because as soon as I showed my arms, I automatically felt vulnerable and anxious. If you’re not ready to wear shorts in the summer or a t-shirt, then don’t. You’ll be ready in your own time and when you are, you honestly wont give your skin a second thought…

    Lesson 4: Makeup

    I’m not heavily into makeup but always admire when a girl has done a great job with hers! I use very simple products – a good quality foundation, eye pencil, a rosy blusher and a good highlighter for my cheekbones. However, when im feeling to make a little more effort, I often like to contour or use eye shadows that match what I’m wearing. Makeup doesn’t have to be fussy to be effective; sometimes a good lipstick or bringing some focus to your eyes can really complete an outfit…

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    Vitiligo

    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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    Vitiligo

    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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    Vitiligo

    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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    Lifestyle

    “Body Blur by Vita Liberata has become my miracle product”

    A few months back, I was lucky enough to take part in another campaign – this time with Vita Liberata, a premium organic skincare and sunless tanning brand popular with the likes of Rosie Huntingdon Whitely and Rita Ora.

    The idea behind the campaign was to demonstrate how Body Blur, an instant body makeup that gives a flawless skin finish when applied, can benefit those with vitiligo or any other visible skin condition. The conversation between myself and the brand started after a very satisfied customer got in contact to say that the Body Blur, one of their premium products, had saved their life. The customer, who had used self tanners in the past, had spent years trying to find a product that disguised the patches on her skin, but nothing she used seemed to create the coverage she wanted. She then discovered Body Blur and was so overwhelmed with the results, that she contacted Vita directly to say just how much the product had helped her. In response, Vita contacted the Vitiligo Society, where I am a Director and so a conversation around how we could collaborate and widely share the benefits of Body Blur, began.

    I’ve always been very open about the fact I use self tanners, especially during the summer because as someone who is mixed race with vitiligo, it meant that my white patches were a stark contrast against my caramel coloured skin. This meant that I tried everything in m power to disguise them – camouflage makeup in the first instance and then later self tanners. I worked my way through an entire shelf of products; creams, mousses, gradual tanners and sprays and always went for the darkest shade possible. My obsession meant that I’d apply layers upon layer until my skin was barely noticeable and practically orange! It was the only way I’d feel remotely comfortable showing my skin to the public.

    I’ve always felt like people often have strong views on self-tanners and camouflage makeup and have seen comments online such as ‘you shouldn’t feel as though you should disguise your skin’ and ‘not using coverage means you are totally accepting of your skin’. For me, wearing self tanner isn’t a measure of a person’s confidence and no one should be made to feel as if wearing fake tan is deflecting away from their natural beauty. It’s simply a personal choice. This is why taking part in the campaign felt so appropriate to my own personal journey and fully supported my strong views on covering vitiligo as being a person’s choice.

    Back to the campaign! The campaign brief was that a group of girls would come together as friends, sharing their story and testing the products in front of the camera. My biggest hurdle was finding a group of women who had used fake tan in the past and wanted to take part. I instantly started sending messages to girls I had spoken to on social media and admittedly some women were reluctant as they either didn’t cover their skin, had stopped using fake tan and felt as though it went against their opinions on using products that covered their skin. However, there were a group of girls that were keen, loved the idea of testing the products and being part of a campaign and were experienced users of self-tanners.

    Prior to the shoot day it was important that I tested the product to make sure it was something I would genuinely use. When the sealed box arrived in the post I was incredibly excited about trying it! Ten minutes later, my skin looking fresh, I started applying the Body Blur to my legs with a tanning mitt and was blown away with the results. It was as easy as applying moisturiser, took seconds to dry, smelt great and most importantly didn’t mark my clothes. The product was a winner!

    The actual shoot itself was so much fun! I got to record the campaign with three lovely ladies who also shared similar stories to mine. We spent quite a bit of time getting to know each other in between recording and really connected because we had vitiligo. Vita Liberata founder, Alyson Hogg carried out the recorded interviews and took a real interest in what it was like for each of us living day to day with the condition. Each of the models spoke about how and when it first developed, that pinnacle moment when we realised we were different, using camouflage products in the past and how we found using Body Blur.

    This is one of my first major campaigns and as someone who has spent many years trying and testing coverage products and self tanners, taking part in this one felt right. My view has always been that I will only take part in a campaign if I genuinely believe in the product and would use as part of my daily routine. If its something I would benefit from, then potentially, others with Vitiligo also will. Body Blur has changed my perspective on coverage products because of how easy it is to apply and how natural it looks on the skin and its definitely made it on the list as a suitcase must have….

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    Vitiligo

    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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    Last month, I travelled from London to South Devon to a tiny village called Totnes, for the Bodykind Festival, the world’s first festival that celebrates and promotes bodily acceptance.

    Now in its third year, the Bodykind Festival is the brainchild of Dinah Gibbons, an inspiring change maker and former midwife keen to bring women (and men!) together from all parts of the country to celebrate beautiful bodies irrespective of disabilities, curves or skin conditions. Dinah, who describes the core values of the 2 day event as promoting inclusivity, celebrating diversity, illuminating and challenging non acceptance and meeting fear and shame with sensitivity and kindness, first hosted the festival in 2017 when she invited guests such as Megan Crabbe (a.k.a Bodyposipanda) and Harnaam Kaur (the bearded lady) to speak about their journeys in relation to bodily self love.

    This year was my first time at the festival. Spread over two days with the core event taking place on Saturday 4thMay, the informative programme was a combination of workshops (puppetry workshop), inspirational talks (Bodiposipanda, Grace Victory), panel discussions (including myself and Sylvia Mac from Love Disfigure), performances and inspirational talks from those who had faced challenges in a society where high emphasis is placed on looking a certain way. The conversations were open and honest with enthusiastic involvement from the audience, who were keen to ask questions and share their own insights into those things they had personally experienced. Whilst the conference was attended mostly by women, it was great to see men in the audience, which is something Dinah is keen to promote moving foward, because after all self care and acceptance affects us all, even though women continue to be the main focus in terms of loving out bodies.

    In the afternoon, I sat on a panel alongside @bopo.boy, @fatandfab88 and @janu_hairy for a session entitled Radical Self Compassion. Chaired by Molly Forbes who recently hosted Channel 4’s, Naked Beach, the 30-minute session focused on how can we practice being kinder to our body’. Each panel speaker had something different to share from the realisation that self-appreciation doesn’t magically happen overnight; to blocking out negative energy and the frequent self sabotaging conversations we sometimes have with ourselves about why our bodies just aren’t good enough. A stream of suggestions and thoughts were shared when asked how we practised self-compassion and with the positive response from the audience, it really encouraged us to open up and share our personal stories that we felt would inspire those around us.

    The day came to a close at around 4:30pm afterwhich I raced off to catch my train back to London as the next day I was flying to Ibiza with a suitcase bulging with new bikinis. That’s me practising self-care right there! The day had an incredible level of energy right from the start and I left feeling content and inspired. Events like these are much needed, as aside from the guests who shared stories with such authenticity, it’s a great way to meet amazing women who are there to support each other. Already I’m looking forward to hearing about next years plans. Watch this space….

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