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Vitiligo

    Vitiligo

    Sun Awareness Week 2017

    We all know just how important it is to stay protected in the sun, especially for us with Vitiligo. Since developing Vitiligo, my Mum has stressed the importance of using sun cream with the highest SPF. As kids, whenever we used to travel, both in the UK and aboard, Mum would smother my skin in sun cream before getting me dressed every day. She would always use factor 50 which, even though made me feel as though I was melting in the sun, always prevented me from burning or causing damage to my skin.

    As I got older and became aware that the ‘sun kissed look’ was preferred by the girls in magazines, I started to avoid sun cream altogether. I’d watch as friends applied factor 5 whilst on our summer holidays and convinced myself that just a little sun wouldn’t do any harm. When I realised that Vitiligo prone skin didn’t quite tan in the same way, I quickly learnt my lesson and reached for the sunblock instantly.

    Living in the UK, I’ve always brushed off the idea that the little sun we get will cause any damage, however I soon learnt that even the seven the lowest rays of sun can still have harmful and long lasting effects, even when hiding behind the clouds. Now, I always ensure that my makeup and moisturisers always contain SPF.

    So, what does the sun mean to us with Vitiligo?

    Due to the lack of melanin in our skin, our patches are more vulnerable to sunburn because we have no protection against the sun. ‘Normal’ skin is protected by melanin (skin pigment) whereas for us, our patches mean we have no natural protection against the sun meaning we burn alot quicker.

    To stay well protected, it is vital you use a sunscreen; as this protects us from the ultraviolet lights that comes from the suns rays. There are two types of rays; UVA (long rays) and UVB (medium length rays). To keep our skin well protected, an SPF of 30 or higher is necessary, especially during the hotter months.

    What does Sun Awareness Week mean?

    Sun Awareness week begins on May 8th and was introduced by the British Association of Dermatology (BAD) after a survey revealed that eight out of ten people are failing to apply sunscreen before going out in the sun. A shocking statistic considering the dangers around exposing the skin in the sub. Sun Awareness Week is about increasing awareness around protecting your skin, making sure it is applied properly and reminder that sunscreen should be applied every 2 hours for maximum protection.

    For more information click here:

    http://www.bad.org.uk/for-the-public/sun-awareness-campaign/sun-awareness-week

     

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    Dating and the Vitiligo Girl

    Who doesn’t love being in love! Whether its getting ready for a date night, a film and a takeaway on a Saturday night or just being in each others presence knowing that you appreciate your time together…..love is a beautiful thing! 

    Whilst I love being in a relationship, I remember the days when dating part wasn’t much fun! The part where you meet the guy on a night out with friends, exchange numbers and spend a few days texting was all fine, it was the part when ‘do you want to meet up’? became the obvious next step and I would start to feel uncomfortable with the prospect of meeting up, one to one.

    In my early 20’s, I placed so much emphasis on my Vitiligo, that it made it difficult to enjoy the social element of dating. I was obsessed with the idea that my skin would come as a shock and so feeling naturally comfortable and relaxed whilst on a date, was sometimes very difficult.

    Days before we were due to meet, the usual questions and scenarios would play on my mind.  I would try and work out how I thought my date would react to my skin condition and tried to see my skin through his eyes, which was obviously impossible! I questioned whether it would put him off and if it would create a sense of awkwardness, which was the last thing I wanted someone to feel.

    It took a few years before I was able to feel comfortable and less conscious about my skin. I realised that my skin wasn’t actually as noticeable as I thought it was and that people were interested in me as a person, as opposed to what my skin looked like. I started to feel more relaxed within myself and started to block out any negative thoughts or questions. Accepting myself and realising the most important thing was to be myself, eliminated nerves and gave dating a completely new perspective. These days, the only thing I worry about now, like all women, is what I’ll wear. Anything else I deal with later…..

    So, with my negative attitude towards dating very much behind me, here are my tips on how to enjoy and make dating memorable for you…..

    Don’t hide behind your clothes

    Planning your outfit can be one of the hardest dating decisions to make! I’m sure every girl would agree! However, for us girls with Vitiligo, the look we decide to go for can sometimes revolve around our skin because of our desire to disguise it.

    My ‘go-to’ outfit was generally always the same – skinny jeans, a top with long sleeves and a fitted blazer and whilst the tailored look is very much my style, I knew my wardrobe choice was based around me wanting to remain covered, as opposed to me having the freedom to wear what I wanted. In my mind, I wanted to ‘sell’ who I was a person, without my Vitiligo being the center of attention.

    My desire to stay covered meant I avoided choosing something I felt good in. Covering up became my way of ignoring its existence, even if it was short term and I knew eventually it would come up in conversation. I didn’t want to be judged or disappoint my date so I remained covered until I was comfortable talking about it.

    Now, with very little insecurities about my skin and who I am, dating is a lot more interesting! I wear what I feel good in as opposed to feeling the need to covering up, after all if anyone I date doesn’t like me for who I am, he just isn’t the right guy for me!

    Don’t spend time worrying about what your date might think

    Whether you have a skin condition or any other type of physical insecurity for that matter, chances are you may find yourself worrying about what your date might think. For me, I worried about what he was going to think about my skin and whether it was something that would put him off.

    They were unnecessary and irrational concerns because ultimately you can’t really predict how the other person will respond. Don’t think about questions that don’t really need answers because it causes a needless reason to panic and feel nervous. Think about the now, like which outfit makes you feel amazing (for me its normally a skin brightening colour such as yellow!) or which bar serves great cocktails! Your personality is what counts. Allow your date to see how amazing you are without worrying about what he might think of your skin.

    Here are my tips on what ‘not to do’

    If you want to explain what Vitiligo is, do so.

     If, whilst on a date, you want to explain what Vitiligo is, feel free to do so. If you feel like it’s something you want to get out in the open, then confidently bring it up when the time feels right for you. Opening the dialogue shows that you’re comfortable talking about it and are relaxed about answering questions. You may find it’s a ‘weight off your shoulders’ and will help you to relax once you’ve explained what it is.

    There is no right time to mention

    I always thought there was a right time to have a conversation about Vitiligo. The first few dates felt too soon, but then there was the risk that if I left it too long, he would be wondering or second guessing what was really wrong with my skin….but then I wanted to feel comfortable so maybe date four wasn’t quite right either….

    Looking back, I gave it too much thought. There isn’t a ‘right’ time when you should explain what Vitiligo is and how it affects you. You may find it comes up naturally during conversation because you feel comfortable around that person, or because your date openly asks you out of curiosity. He may even say nothing at all, because it isn’t something he feels needs an explanation. Allow it to be something that comes up naturally rather than making it feel forced.

    Dating is supposed to be memorable and enjoyable! And regardless of how your skin looks, some dates are going to be amazing and some disastrous! Dating is potentially the very foundation to a lasting relationship and you want it to be memorable. Try not to give your skin too much thought and only see it as an opportunity to let your personality shine through. Remember: You are who you are and Vitiligo is not part of your personality….

    Photo: Kaye Ford @ Fordtography

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    2016: A Year of Real Stories With Real People

    In 2016, it was so refreshing to see more and more people within the Vitiligo community sharing their stories and opening up about the patches on their skin. Like many readers, I found these stories courageous, positive and inspiring. I loved reading how girls and women had overcome their fears of being judged and learnt how to embrace their skin. For me, it made me feel a sense of empowerment….connection even, as I felt so close to the stories which felt so similar to my own. Most of what I read ended with similar themes; women that learned to love their skin and finally felt beautiful, brave and most importantly, care free.

    One of the first articles I wrote was ‘Life with Vitiligo: my white skin cells started to attack each other’ for the online charity, Ditch the Label. Written by myself, it was a moving encounter on who I was as a little girl with Vitiligo, and who I am now. And even though I still feel an element of exposure, every time I agree to write a feature or share my story, there is something very invigorating about opening up and not being afraid to do so anymore.

    So with the stories of 2016 creating such positivity within the Vitiligo community, here are my picks on some of the influential and memorable stories from yesteryear….

    Teen with Vitiligo spent her life trying to fit in – but now realises she’s beautiful

    A courageous encounter from a teenage girl from Baltimore, USA, who later featured in the TV series ‘Too Ugly for Love’.

    Wonder Winnie

    An amazing 4-page feature detailing international star, Winnie Harlow’s journey. It was so great to see her featured in a mainstream, UK magazine aimed at women. Accompanying the interview were some great fashion shots, which really highlighted the beauty of her skin. Subsequently, I wrote to Grazia to thank them for the article and the following week I was selected as ‘Letter of the Week’ and bagged myself some lovely goodies from the natural beauty range, Lucky Cloud!

    Vitiligo sufferer who was bullied for looking like a ‘burns victim’ reveals how Instagram finally gave her the confidence to flaunt her skin patches

    Beautiful Cat Spedding from Yorkshire, UK, hid her skin under layers of clothes like most of us have done at some stage in life. However, after noticing just how much others were embracing their skin, with the support of others, she learned to love her skin and took to Instagam as proof that she no longer felt the need to hide.

    Young Achiever: My journey of acceptance

    The beautiful story of a young 15 year old girl, who wrote and illustrated I’m Not Unusual, I’m Just Unique, as part of her school project.

     “It’s called Vitiligo.” Woman’s poignant tattoo educates people on the skin condition”

    A story with a difference! Tiffany Posteraro, from New York, decided to have ‘its called Vitiligo” tattooed onto her skin after years of taunts and cruel bullying

    Michaela DePrince: Body image is a matter of opinion

    Not quite a 2016 story, but an awe inspiring, favourite feature to say the least. It’s the compelling and heart aching story of ballets beautiful star, Michaela DePrince, who was told she was the ‘Devils Child’ because of the way she looked.

    Do you have any stories that have inspired you over the past year? Feel free to share….

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    Talking To Your Child About Vitiligo

    “Mum….these are my favourites. Can I wear them to playgroup today”? I pleaded, as I gripped onto the tiny pair of pink shorts with both hands, preying I’d get the chance to wear what I wanted, as opposed to Mum choosing, like she normally did.

    It was a warm day in July; we were comfortably into the six weeks holidays and the local playgroup centre that arranged kids activities for the community that lived on the estate, were organising a picnic on the green. All the kids were likely to be there.

    …So here I was wanting to wear my much loved shorts which of course revealed my bare legs that bore the evidence of Vitiligo…

    The best thing my parents ever done was openly showed that I wasn’t different to anyone else. Developing Vitiligo at such a young age meant it was my parent’s responsibility to explain to me why my skin wasn’t quite the same as everyone else’s, and until that conversation came, they would be speaking on my behalf. Explaining to those who were curious, pre-warning the teachers in my school and most importantly, laying the foundations in terms of teaching me how to love my skin.

    Growing up, I didn’t ask many questions about my skin, as it was never made a topic within our household. Naturally, my parents were well aware of the implications that could potentially arise at school, especially as I was the only one out of 600 students in my primary school, that had multi-coloured skin.

    On my first day at school, my Mum showed up at my classroom, 10 minutes ahead of the bell. It was an opportunity for her to explain what Vitiligo was and pre warn ‘Miss Lock’ that the other kids may ask questions and how she should respond. My parents were very specific with how their words, in terms of how they explained to others and most importantly, how they explained to me….

    Explain to your child as soon as they’re old enough, what Vitiligo is….

    Only when I started questioning my skin, did my parents explain to me what it was. Prior to that, they didn’t feel the need to sit me down and officially explain the science behind Vitiligo! They kept it simple by explaining the basics behind the condition whilst reassuring me there was nothing wrong with having Vitiligo. They were clear in that it didn’t change me as a person nor did it affect my ability to do anything, such as go swimming or play sport in shorts! They often reinforced the fact I was a pretty little girl and that looking different didn’t change who I was.

    Instil a strong sense of identity and self-esteem….

    My parent’s biggest priority was making sure I was comfortable and confident with who I was even though they knew realistically, I wasn’t going to be seen as ‘normal’ by everyone. They were effectively up against anyone I would come into contact with, and who may question why I looked different. They wanted me to be able to handle questions confidently and not retreat or shy away in embarrassment if someone was curious. Sometimes they’d ask me to explain what Vitiligo was, just so they could see how I’d react and how I might answer! Of course my parents would tell me how lovely and pretty I looked prior to a school friends birthday party or when they dressed me identical to my sister, but they didn’t over do it. These days, with the world’s obsession with beauty, it’s important for children to understand the importance of embracing their indifferences. Explaining and ensuring they understand its okay to be imperfect and that those with ‘flaws’ will discover the same love as everyone else.

    Encourage your child to step outside their comfort zone

    My parents were well aware of the situations I found comfortable. Sticking to my small circle of friends, not going anywhere that meant having to be around large groups of unknown people and sitting quietly in school and remaining unnoticed as much as possible were the environments where I felt most the most relaxed and myself.

    Like most parents, mine wanted me to move between zones, without too much pressure. However, this is something very hard to do, as children don’t always understand your logic and will often refuse without much reasoning if something out of the ordinary is presented to them. My parents would encourage me to attend the playgroup centre or after school activities, by arranging a friend or my sister to come along. That way I didn’t feel so alone and always had someone to turn to if I felt anxious. Eventually, once I was familiar with the environment, I was able to go alone.

    Help your child to accept Vitiligo…

    As parents, it may be that you feel helpless because you feel as though your child is going through the ‘challenges’ alone. Whilst this is ultimately the case, especially as they get older, the support you provide is imperative and is everything they need during the difficult times. Instil that their appearance is only a small part of who they are. Voice statements such as;

     “My skin is normal, it just isn’t the same as everyone else’s”

    “We’re all different and unique”

    “My Vitiligo is part of who I am and it’s a part of me I love and accept”

     The early years are informative and memorable years. Make sure you teach and guide them towards understanding that being different is very much a part of the world we live in….

     How do you talk or explain Vitiligo to your child? Please feel free to share!

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    Why World Vitiligo Day is a Breakthrough in our Community….

    On June 25th 2011, Steve Hargadon, founder of the Vitiligo Friends Network and Ogo Maduewesi, founder of VITSAF, officially launched the first ever World Vitiligo Day. One of the key aims when formulating the event, was to raise awareness of Vitiligo that affects just 1% of the world’s population (around 50 million people worldwide). Fast-forward five years and World Vitiligo Day is an internationally recognised event that brings together thousands of people who have something uniquely in common.

    Having an official day that celebrates the beauty in our patches is an incredible breakthrough. The last event on June 25th which was held in Washington, was an upbeat celebration attended by a few hundred. The campaign launched alongside the global event was ‘walk in our shoes’ which asked that family, friends, colleagues and those with Vitiligo, to wear a temporary white tattoo on an exposed area of the body in hope that it would raise curiosity and encourage people to ask questions. The overall idea was for people to recognise what its like to be stared at when something about you looks different.

    So, with the 25th June very much set in concrete, why has World Vitiligo Day become such an important date in the calendar…..

    WVD makes you realise where we are NOW…..

    Twenty-four years ago when I was a vulnerable 10-year-old girl; I was convinced I was the only one in the world who had Vitiligo. I very rarely came across anyone who looked like me and so my awareness of those across the globe that were also affected, was non-existent. Social networking didn’t exist; neither did meet up groups or events that would bring everyone together. There used to be a huge social stigma with being different. You were highly likely to be judged, ridiculed and thought upon with sympathy because you didn’t conform to the norm. Now with social media changing the way we communicate and present ourselves to the world, more and more people are embracing their patches in the photos and stories they share. The forums and groups are encouraging and positive, proving that we too, can be just as comfortable in our skin.

    WVD is more than just bringing people together…

    All the planning, organising and liaising brings together an agenda that provides a significant opportunity to raise awareness. Explaining what Vitiligo is to those who are guilty of staring and making comments. Cutting out the ‘what is it?’ questions. The curious questions that lead people to believe it’s the result of being burned. Having adults and children understand that it isn’t life threatening or contagious, which is a common question (and myth!) that often gets asked. It’s an opportunity to talk about the psychological effects and the solutions and build around improving the quality of life, ones self esteem and confidence.

    WVD is an opportunity to learn and feel confident about your skin…

    Being amongst a group of people whereby you share something unique in common is incredibly empowering. The energy levels are often high and you end up soaking up the incredibly positive atmosphere. A group where you feel a real sense of belonging can often make you feel comfortable about opening up and sharing your journey, however difficult. It also allows you to look at yourself from a different perspective especially when you see others who are confident in their skin. Seeing others can have a real impact and eventually have you feel more accepting of your own…..

    Plans are already underway for the 2017 event which will take place in Sao Paulo, Brazil, with the agenda likely to feature tips on applying makeup, people led stories, experiences and testimonials and expert advice from Dermatologists on the latest global research. I’d love to make it! If not, I’m happy to wait until London becomes the hosting nation…

    Have you ever attended a world Vitiligo event?

     

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    3 Things That Happen To Every Girl With Vitiligo….

    As a girl with vitiligo, I know what it’s like to have moments of weakness. I spent many years hiding away, not wanting to talk about my skin or answer questions. Instead, I tried to ignore my skin – to turn a blind eye to the one thing that impacted my life the most. I wanted the world to see someone that was confident, even though deep down inside I hadn’t accepted who I was on the outside.

    Fortunately, after years of working to build my confidence, I’ve learned to accept and love the spots I was born with. And while I recognize that I don’t quite fit in with the strict parameters that the media forces us to believe is beauty, I understand that beauty comes in many forms. And beauty does include girls like me.

    While my journey with learning to love my spots still continues, here are some of the things I’ve learned that are “okay” and “normal” when you live with vitiligo…..

    Read my guest post in its entiretery on Living Dappled…

    3 Things That Happen to Every Girl with Vitiligo

     

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