Follow:
Browsing Category:

Vitiligo

    Vitiligo

    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….

    Share:
    Vitiligo

    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!

    Share:
    Vitiligo

    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?

     

    Share:
    Vitiligo

    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

     

    Share: