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    Lifestyle

    BARING ALL WITH LOVE DISFIGURE

    As someone with a skin condition, there was a time when I hated the idea of a beach holiday. The thought of couples strolling along the beach, women with ‘beach ready bodies’ and attracting stares that questioned why my skintone wasn’t typically mixed race, was enough to make me board a plane to New York rather than the Seychelles. It was only later, when I entered my thirties, that my attitude started to change as I realised just how much I was missing out on, because I was too busy worrying about what others thought of me.

    Earlier this year, I stepped (actually make that leaped!) outside my comfort zone and took part in a swimwear photoshoot set up by burns survivor Sylvia Mac, the founder of Love Disfigure and passionate campaigner for diversity within the fashion industry. Sponsored by swimwear brand, Swimwear 365, Sylvia chose 20 inspirational models, all with their own unique stories, with the vision of celebrating and bringing recognition to those with visible scars and skin conditions such as Vitiligo and Psoriasis.

    When Sylvia initially asked me to take part, I was apprehensive. Would I really be comfortable being photographed in my swimwear? Was I mentally ready to take part in a campaign that could go global and which would be heavily promoted across the media? I was uncertain because a tiny part of me still felt like the 15 year old that mostly wanted to disguise her skin rather than show it. Nevertheless, after giving it some thought and the importance of body positivity and embracing who we are regardless of how we look, I excitedly agreed to take part.

    The shoot, which took place at a North London leisure centre, was captured by photographer, Sophie Mayanne who is also the creator of the highly successful, Behind the Scars project. When I arrived, I instantly recognised some of the other models, not because i’d met them before, but because I’d read their courageous stories perviously in the press. In an instant, conversations started and everyone started exchanging stories that echoed strength and survival, I couldn’t help but feel inspired by the positivity which quickly put me at ease with showing my body in swimwear.

    It didn’t take long for the official photo launch to come round. Taking place at a London venue, I’d not seen any of the photos and so had no clue what I looked like and to be honest, I was now more concerned about my unpredictable curly hair rather than my skin! Ultimately, I didn’t know whether I’d hate how I looked in front of the lens or if I’d be blown away! There were constant streams of people arriving at the auditorium to show support for the campaign, including ex Olympic swimmer, Sharon Davies. Sylvia opened with a moving speech about how she had conquered her own personal battles, after an accident involving boiling hot water which left her with scars on her back and various other parts of her body at the age of 4, followed by a beautifully edited clip of some of the photos captured on the day.

    As the reality of each photo revealed itself, my mind drifted back to those stories I’d learned about on the day of the shoot. It was then I realised just how proud I was of myself and all the other models that had taken part. The stories of those that had experienced difficult times, the struggles of acceptance and most importantly, being survivors of the path that had been put before them.

    Thankfully, I loved every single photo. They were incredibly natural. The swimwear design and colour complemented my skintone and my bright red lips worked well against my loosely hanging curls.

    Since its launch, the campaign has been praised across the media, featuring in The Independent, The Sun, The Daily Mail and Women’s Health Magazine. Some of the models have also featured on This Morning, modelling this years hottest swimwear looks. It really feels like change is coming and its most definitely better late than never….

     

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    Lifestyle

    Celebrating World Book Day

    Even as an adult, I find the energy around World Book Day exciting! Every year, on the 1st March, children set off to school dressed as characters from their favourite storybooks and spend the day celebrating stories and the importance of reading.

    As a young girl, I used to love reading. I was a big Judy Blume fan who brought us teen classics such as ‘Are You There God? It’s Me, Margaret’ and ‘Iggie’s House’ and begged Mum to buy me the latest edition of Sweet Valley High when it was released, as I couldn’t get enough of Jessica and Elizabeth Wakefield, the most popular high school twins during the early 90’s!

    When I look back to most of the stories I read growing up, it’s only now, I realise just books that represented those with in-differences were sadly non-existent. I mean…could you ever imagine Belle from Beauty and the Beast having eczema or Vitiligo or a Disney character having some form of disability. That probably sounds incredibly far fetched, but why should it, after all these are people that represent those living a life in todays society.

    Things have moved on since my younger years thankfully, and we are seeing more books slowly emerging with characters that represent those like us, teaching us that we too are worthy of being characters in the fictional world. So of course, it only feels right, given what World Book Day is all about, that I give a round up of the books where characters with Vitiligo are taking the lead…

    Snow White & The Seven Patches by Jewel Kats

    This lovely story is a modern day version of the classic fairytale. With typical themes such as evil versus good, a poisonous apple and the magic mirror, the only big difference here is Snow White was born with beautiful, white patches. A book with great illustrations, a familiar storyline with an interesting twist…

    Saniyah Goes To The Zoo by Scott P Dawson and Saniyah Dawson

    There are so many things children with Vitiligo can face – bullying, staring and feelings of isolation and this is a story that tackles such themes. Saniyah goes to the zoo is about those very things children often face when they have an indifference. A great story that will teach your child how to handle and overcome such situations positively when they might feel like others are against them. One for teaching some of life’s simple lessons…

    Vitiligo Doesn’t Scare Me by Kim Kirkland

    The title of this book is so warming! Vitiligo Doesn’t Scare Me follows the journey of a little boy called Chris who discovers he has the condition after a visit to his GP. Naturally he becomes concerned and finds he is faced with a number of challenges because of his indifference. Throughout the story he faces a number of issues and feelings as he comes into contact with those who notice he has the condition and although he is aware his skin looks different in some places, having Vitiligo doesn’t scare him….

    A No Nonsense Guide to Vitiligo by Yan Valle

    Whilst this isn’t a story book as such, its still a great book that offers insight into Vitiligo. Recently published, The No Nonsense Guide to Vitiligo is what the Dermatology world, and those with Vitiligo are in need of. 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. 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, covering themes such as potential triggers, how to feel confident about treatment options and how to detect the early signs of Vitiligo.

    Taking Flight: From War Orphan to Star Ballerina by Michaela De Prince

    This is the incredible story of Michaela De Prince (pictured), a successful young dancer who escaped a country riddled with war and set her sights on becoming a leading star in Ballet.

    She was infamously known as girl No 27 in the orphanage in which she lived, a place where she expected to feel safe, but instead became a place of abandonment when it was discovered she had a skin condition that turned her skin white. For that very reason she was known as the ‘Devil Child’. After suffering torment by those who were supposed to care for her, she was adopted by an American family who nurtured her love of dancing and which later lead to her becoming one of Ballets most successful stars…engaging, unforgettable and well worth the read…

    Photo by Serena Reidy Photography

     

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    Lifestyle

    Why Im Not Committing to New Year Resolutions

    Happy New Year all! Welcome to 2018! I can honestly say, 2017 was a year that I couldn’t have predicted and feel very lucky to have experienced so many amazing things. Appearing on ITV’s The Lorraine Show alongside Dean Edwards was a memorable highlight, as was hosting The Vitiligo Society annual open day in November and being photographed to appear in the glossy coffee table book that was produced to celebrate the 25th anniversary of Changing Faces.

    So with the New Year being our new focus, quite naturally I needed to write a post about New Year Resolutions! I’ll start by saying my attitude towards New Year resolutions have always been pretty relaxed. In fact, if I’m totally honest I’ve only ever really set them because it’s the traditional thing to do when the year comes to a close. Last year I vowed to go to the gym twice a week. I failed miserably because i’ve never been a fan of workouts and exercise classes. I also promised myself earlier nights, so that I could write for an hour the next morning, before the start of my day. I was a little more successful with this one, although as soon as the clocks went back and the mornings were colder and darker, I want straight back to snoozing my alarm in favour of  an extra hour in bed!

    I’ve always said, there shouldn’t be a specific time for changes. Everyday should be an opportunity for positive change and slip ups shouldn’t leave you feeling defeated. This year, I’ve decided not to set firm resolutions. Just some simple, realistic goals that will keep me focused and give me some direction for the year ahead. They’ll be no pressure to enforce certain actions and nor will I be disappointed if for one month I haven’t given them a single thought. Here goes:

    Blogging: Networking

    As a blogger, there is nothing more satisfying than meeting other girls that have the same passions and desires as you! Networking events are a great opportunity to learn from others and feel inspired by ideas you might not have thought of! Bizarrely enough, I don’t do it often. Im guilty of coming up with excuses – to far too travel, will it live up to expectations, do I even have the time to fit in an event amongst everything else going on….In 2018, I have vowed to attend at least one networking event a month that focuses on bringing bloggers together….I’ve even booked my first bloggers conference already! In June I’ll be attending the Scarlett London’s Blogging festival and I cant wait!

    My Passion: Writing

    Writing is my ultimate outlet. It’s one of the few things that relaxes me, helps me to switch off and reminds me what I’m good at! Yet, considering this, I don’t do it enough. This year I vow to write more. More blog posts, more planning and more trips to coffee shops, because its where I love to write the most.

    Perfection: Not worry about new spots

    I just had to commit myself to something that relates to why I write this blog! Quite a few times last year, I found myself standing with my nose touching the mirror as I inspected my face for signs of new patches that quietly tried to appear without me noticing. Now I realise, there is no point in worrying as its something completely out of my control. I tend inspect through habit and because I want to know beforehand if my skin is changing, but thankfully my skin feels more stable than ever, so for now, the only thing I want to use the mirror for, is to apply my makeup or admire whatever it is that I’m wearing!

    Stay Focused on my Wellbeing

    Wellbeing is about loving, caring and being kind to yourself. When I think about the word ‘wellbeing’ I think about expensive retreats in the UK countryside, regular full body massages and a weekly food shop that eliminates crisps and chocolate and instead focuses on avocados, super foods and anything that tastes like a seed. Wellbeing is about doing the things that make you happy and allow you to have timeout, whether that be reading a book, getting a full 8 hours sleep or meditating before bedtime.

    For the first time in 10 years, I’ve read my first full book and it feels like a major accomplishment. I know how ridiculous that sounds, but I’m always so wrapped up in other activities, that I never allow myself time to engross myself in a good story. Now, instead of scrolling through pointless Instagram feeds on my commute into work, I use the time to read which is so much more satisfying than looking at photos of a fitness guru who most likely lives on the opposite side of the world! This year I vow to maximise my ability to self care. Yes, i’ll continue with my frequent spa visits and weekend breaks, but i’ll also be incorporating those small things that are just as important for the soul…like reading.

    So there you have it, my simple, non-pressurised ‘resolutions’ for 2018. In fact, I’m looking forward to seeing how much I incorporate them into the next 12 months. For now, I wont worry to much, and instead will wish you all a very happy and healthy 2018…..

    Photo: Kaye Ford @ Fordtography

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    Lifestyle

    Schools Visit With Changing Faces

    Last week, two fantastic primary schools welcomed me as a speaker representing the charity, Changing Faces. Coinciding with Anti Bullying Week (13th – 17th November), I was asked to speak during their weekly school assemblies about my experiences as someone living with a visible skin difference.

    Given my own school days are long behind me, being back at school gave me an overwhelming nostalgic feeling. Walking down the corridor, glancing over the school walls plastered with children’s drawings made me instantly smile. As did the hopscotch on the floor as I walked across the playground and the polished floor that looked as though it had shined over the weekend, ready for another school week. There was even the distinctive school smell…..a heady blend of musty schoolbooks, mixed with the wooden smell of the bookcases that lined the corridors. It was so nice to be back…..

    The night before, I had been repetitively reminding myself that there was no need to be nervous, after all, two days prior I’d presented at The Vitiligo Society Annual Open Day (separate post!) and in a way, presenting to a group of cute school kids in years, 3, 4 and 5, shouldn’t have been two daunting. I was fine as I waited in reception for the head teacher….still fine when I was greeted by the PE teacher in the assembly hall where I was due to present. But, as I guessed, my nerves started to fail me as the kids started to trickle in, class by class, filling the room like it was a conference that had reached full house!

    By 10am all the kids were sitting quietly, cross-legged, on the floor looking a little intrigued by my presence. After the Deputy Head introduced me, I was handed the mic to start. The children were incredibly enthusiastic within minutes. Before I gave them an overview of who I was, I briefly explained who Changing Faces were and their role as a charity who supports people with indifferences. Before I began with my own story as someone with Vitiligo, I asked how many of them had heard of the condition. I was very surprised when more than half raised their hands. Good start!

    As I spoke about my journey and how having a skin condition affected me when I was around there age, they were keen to ask questions and share how it might feel to be different. Keen to interact, I asked their views on how it feels to have a visible mark, to which they gave impressive answers such as; it can make you feel unique and beautiful, makes you feel different and on the flip side how it can make you feel sad when people stare and ask intrusive questions.

    After presenting, I gave the children an opportunity to ask questions….and of course my slight fear was that they’d be silence! But it was great to see their hands shoot up! I was asked questions such as ‘Did I have treatment’? ‘Was I born with Vitiligo’?, and ‘Is is the same as a birthmark?’…..all of which were very common questions.

    Later that week, I made my way to a second school for a mid afternoon assembly. Fresh from lunch, I presented to a slightly smaller group of year 6 children which was a completely different experience. I gave exactly the same presentation however, this time I was conscious that one of the kids actually had Vitiligo. When I asked if they’d heard of the condition less hands went up, which I was surprised by especially as they were older. They listened intently and shared their views about what it was like to be different, but their responses were interestingly different. They highlighted that you would likely feel isolated, sad, embarrassed, uncomfortable and cautious of potential bullying and staring. All of which are very true, but they didn’t suggest that you may feel unique, beautiful with an embracement for being different, like the previous school.

    After presenting in two very different schools, I reflected on how the children in each of the schools responded. I personally felt as though children in higher primary school years are more conscious of there peers….less likely to put their hands up to share their ideas in fear of giving the wrong answer or possibly a negative reaction from others. Whilst in the younger years, their enthusiasm, interest and ability to share their own personal experiences, was refreshing. They were open to answering questions and quietly discussing some of the other themes that arose throughout.

    For me, aside from it being an ordinary working week, it was a fantastic and personally educating, new experience! Afterall, they are a future generation in the making and I’d like to think diversity and the acceptance of others regardless of appearance, is fully embraced by the time they reach my age….

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    Celebrating A Year of Being Just Us!

    This time a year ago Christmas had already crept into my mind. I was pondering over what presents to buy family because I didn’t want to do my usual and rush around two days before, and I was giving thought to how I would spend twixmas because once again I was finishing the year as a single woman! I was also dreading the end of October when the clocks would go back and another cold and dark winter would officially kick in.

    It was also the same time that my blog, Being Just Us was born. At the time, I’d been writing blog posts for the past 6 months in draft mode because I was apprehensive about revealing my skin in photos and opening up about the thoughts and feelings I’d been storing for the past 10 years. Writing my first post, ‘About Me’, followed by ‘Life with Vitiligo; The Early Years’ made me realise just how important my story and journey was to me. It became my new writing outlet (as opposed to scribbling in endless notebooks!) and I was excited by the prospect of it being public….one day, when I was comfortable.

    Looking back, I wasn’t certain I’d see a year, which I hate to admit as it meant I doubted keeping it up. Working full time, volunteering as a mentor and managing my social life, family life and all the other various things that filter into life, I was convinced I’d end up neglecting Being Just Us, after all, the only person it would impact is me.

    So this post is about looking back. Looking back over the past year and asking myself ‘What have I achieved and will ‘Being Just Us’ see another year after this one….’

    A lot has happened in 12 months. Some things I knew about…others I didn’t. Since allowing myself to feel comfortable within my skin, i’ve always felt like growth is a life long journey with no end date.….and its only now I realise that. I am still conscious of my skin, however these days it doesn’t act as a ‘barrier’ to anything I want to do. This year, I enjoyed short breaks in Madrid and Valencia and loved that I was leaving Britain for much sunnier climates. I felt completely unfazed by how hot it would be, because I was more excited about wearing my new ‘summer wardrobe’ that consisted of dresses in nude shades, midi dresses and my favourite blushing pink pleated skirt with a thigh high slit up the side! It was a 2012 buy that I wore for the first time in 2016!

    I know longer need people to ‘validate’ my look. I recall on so many occasions checking with friends or with my Mum, asking if ‘my legs looked okay’ in my denim shorts. On their ‘say so’ I’d instantly feel relieved and ready to leave the hotel (it was always whilst on holiday!). Now, I get ready, glance at my own self in the mirror, check my hair and leave because I know the only person who should validate how I look, is me.

    In relation to being a spokesperson for Vitiligo, the opportunities have been constant. Earlier this year, I became a Trustee at the Vitiligo Society. A charity, which I became a member of in 1986 because my Mum wanted me to be part of a ‘community’ of people that had what I had. So to now be an influencer in how the society operates is an honour. I’m a real people person, so being the Social Media and Community lead, is the absolute ideal role for me! As part of my role, I get to manage all our social networking platforms (I grew The Vitiligo Society Instagram page from scratch!), interact with support groups and individuals and I also liaise frequently with magazines and TV production companies who are creating opportunities for Vitiligo to be in mainstream media. I joined the Society at an exciting time as they are currently going through digital change. We recently introduced a guided meditation app for those with skin conditions, have relaunched the annual open day which takes place on Saturday 11th October and we are soon to go live with a new story telling platform, The Vit Life. Working at the society does take up considerable time, but its time I love investing.

    I’ve also worked closely with two other amazing charities who strongly support those who have an ‘altered appearance’. Changing Faces, who campaign for face equality, and the British Skin Foundation, who invest time into research for various skin conditions. This year Changing Faces turned 25 and to celebrate they created a coffee table book which I was fortunate enough to be asked to feature in. Entitled ‘Faces of Equality’ (you can purchase a copy here), it was a great way to showcase and interview the various faces of Face Equality. I also recently attended a training session that would prepare me for speaking in schools about being body confident and living a fulfilled life, irrespective of what you look like. Addressing children has always been my goal, so to finally be in a position where I can speak out is an incredibly important step in my journey.

    In May, I recorded a segment with Dean Edwards, celebrity chef and Masterchef runner up! It was recorded for the Lorraine show on ITV and not only did Dean pop round to bake a heavenly banana cake, but we got to chat about life with Vitiligo and how its been for each of us growing up. It was incredibly inspiring to converse with Dean. The conversation felt so natural…especially when we started comparing our patchy hands….the only difference being my cherry coloured nails!

    Also in May, I was interviewed by women’s luxury lifestyle magazine, Phoenix. It was probably one of the best interviews I’d given because I was able to talk ‘freely’ without having my words misconstrued to mean something else. The photos that accompanied the interview were elegant, dark and really captured my Vitiligo in a beautiful light.

    Whilst I don’t want this post to be a CV of what I’ve achieved over the past 12 months, its great to have been given the opportunity to get involved in so many great projects and most importantly, that Vitiligo has gained a platform which has allowed many of us to raise awareness in such a public way. Even now, three years after my first live interview on London Live, sharing my story still forms part of my own self-acceptance and further cements my ability to love the person I am as a woman with Vitiligo.

    2017 year hasn’t finished yet, and there is still more to come which I’m sure I will share as they take place. I love that I have a diary that I can fill with schools talks, interviews and opportunities to share my journey…..and I hope this time next year, when I write exactly the same blog post marking year 2, I’ll have even more positive achievements to share….. just bigger…

    Before I leave, I’d just like to thank all those that have read any of my posts, left a comment or even scanned through for a few seconds. I thank you from the heart 🙂

    Photo: Kaye Ford @ Fordtography

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    Lifestyle

    CHANGING FACES LAUNCHES FACE EQUALITY DAY

    Last month, Changing Faces launched Face Equality Day, a major milestone for the charity who recently celebrated their 25th anniversary. Launched to raise awareness and remind us to be respectful to people regardless of their appearance, it was a day that collectively brought people together from across the UK, to show support and unity for those with a disfigurement.

    Butterfly’s, created as the emblem for the day, were worn to symbolise Face Equality and later shared on social media with events taking place across the UK to make sure the message reached far and wide! Face Equality coincides with a report commission by the charity, entitled ‘Disfigurement in the UK’ which was published on the 26th May, now officially Face Equality Day.

    The report, based on a survey of more than 800 people, revealed some shocking findings that related to all areas of life, for example, four fifths of those with a disfigurement have avoided applying for a job because they believed their appearance would hinder them at the interview, whilst more than four fifths of people have experienced harassment from a stranger or unpleasantness relating to their appearance. The report was proof that things need to change.

    I remember completing the questionnaire at the beginning of the year. The in depth survey really got me thinking about my personal attitude to my skin and how I managed situations where people would question what had happened to my skin. Whilst I feel fortunate that I have overcome a number of challenges and now fully embrace who I am with Vitiligo, every time I submitted an answer to a question, I thought about others who were doing the exact same task, who weren’t so confident about being different and still felt discriminated against because of a condition they have. A painful reality…

    To coincide with Face Equality Day, I was asked to speak with the lovely Jenny Campbell, an award winning poet and short story writer, and who runs a very successful YouTube channel. We had a chat about Disfigurement and its representation in the media….click the link to find out what I think about the media and how it portrays people who are different…..

    <iframe width=”560″ height=”315″ src=”https://www.youtube.com/embed/Isf46cOwhFs” frameborder=”0″ allowfullscreen></iframe>

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    SKIN MATTERS 2017 – MINIMISE THE IMPACT OF YOUR SKIN CONDITION

    Last weekend, I attended the Skin Matters conference in London……the first of its kind.

    Bringing together leading industry professionals, that included Dermatologists, Clinical Psychologists and panel experts, the aim was to raise awareness and further inform those living with a skin condition. The carefully planned agenda caused for an interactive day that benefited an audience that were mostly living with various skin conditions such as Eczema, Psoriasis and Rosacea.

    I was fortunate to be asked (by the conference founder, Lotte Benson) to take part in the ‘The Lived Experience’ which included myself (as someone with Vitiligo), alongside three lovely ladies who live day to day with those skin conditions as mentioned above. I got to meet the girls before the session at the end of the day, so by the time it came for us to speak to the audience, the energy (and nervous levels!) were pretty high! It was so positive and uplifting sharing the stage with 3 other courageous women who confidently spoke about their experiences and how they’ve learnt to accept themselves and live confidently with their skin. I definitely took something away from hearing them speak!

    Whenever im asked to speak, I always feel like I’m learning more about my own story as well as bettering my presentation and speaking skills, and whilst the whole experience can be pretty nerve racking (those nerves sometimes kicking in from the night before – eek!), its always a great feeling walking off the stage knowing I got through and survived!

    The conference was well received and is definitely needed as a way to bring professionals and those with the conditions together, because after all…our skin most definitely matters.

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