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    4 Ways To Help Your Child Understand Vitiligo

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

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

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

    Explain to them what it is in simple terms

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

    Show them stories with characters that have indifferences, including Vitiligo

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

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

    Remain positive

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

    Banish the Bullshit

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

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

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    Parents

    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 about Vitiligo to your child? Please feel free to share!

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    Parents

    Being The Mum Of A Vitiligo Girl..

    When the first signs of Vitiligo appeared when I was 2 years old, my parents didn’t over react, even though they had no idea what it was. As a mixed race child, with fair caramel coloured skin, there was little chance of the distinctive white patch, no bigger than a ten pence piece, appearing unnoticeable.

    Naturally, my parents had questions they wanted immediate answers too. Was it a discoloured birthmark? Was it irritating my skin? and most worryingly of all…..was it going to spread beyond my hand?

    My Mum quickly booked an appointment with our GP in hope that a prescription of antibiotics would remedy the problem! However, unbeknown to her, the problem was much more severe than that and would develop into a condition she had never even heard of.

    So how does it feel when you notice the first patch on your babies beautiful skin? Confused? Angry? Frustrated by the lack of information available on the condition?

    How does a mother respond?

    As the mother of me, here’s how mine responded….

    Finding the first patch….

    As a parent, noticing the first patch naturally sends you into a state of panic. Shock even especially as you have no clue what it is or why its developed. Back when I was a child, Vitiligo was a relatively unknown condition and so when she took me to our GP, he wasn’t able to confirm what it was. The advice she was given was simple; keep an eye which is the last thing any parent wants to hear. She wanted to walk out of the surgery with a diagnosis and a remedy that would clear it within a matter of weeks! Instead, she had to remain patient and watch to see if it was something that would develop or stabilise. She was incredibly frustrated by the lack information.

    The diagnosis

    I was officially diagnosed with Vitiligo 24 months later. Up until the point when I was diagnosed, I’d made a second visit to our GP who still wasn’t able to confirm it was that. The patch had slowly started to spread, covering my arms, legs and worst of all, my face. A referral to a Dermatologist at Great Ormond Street Hospital was when it was confirmed as Vitiligo and that it was incurable.

    Being the mother of a child who is ‘different’…

    One of the hardest things for any parent to face, is ridicule towards their child. It makes them feel helpless. My Mum found the stares and inquisitive questions difficult to accept initially, but gradually developed the understanding that people were curious. Occasionally she would turn a blind eye if she noticed people looking, but other times, depending on how intrusive people were being, she would explain what it was. My Mum recalls an incident on the bus when I was 3 years old. Sitting in my pushchair, with a lolly pop for entertainment, I had caught the attention of two women who were initially talking amongst themselves. They noticed my patchy legs and whispered to one another that my parents were irresponsible for leaving me to burn in a fire! Naturally, my Mum was infuriated by the assumption and made a point of telling them that wasn’t the case!

    My Mum got used to people looking. She refused to cover me up and allowed me to wear shorts, t-shirts and swimsuits on holiday. As far as she was concerned, I was an ordinary child with a skin condition. Simple.

    Support Groups

    There were very limited support groups available in the UK when I was a child, but my parents did attend events at the Vitiligo Society which helped her, not only understand the condition, but meet with other parents who had children with the same condition. Being part of a support network meant she felt supported and not so alone when it came to raising a child that was ‘different. The Vitiligo Society continues to run the annual Vitiligo Society Conference (normally every October) and also runs a parents group every Tuesday & Thursday from 10:30 to 14:30. For more information, please call; 0800 018 2631 or 020 7798 6051. Alternatively, you can email: general@vitiligosociety.org.uk

    The best piece of advice from a mother to another….

    Don’t treat your child like they are different. Natalie’s Mum says “I chose not to hide Natalie away by giving her the freedom to wear whatever she wanted. She wore shorts during the summer and swimsuits on beach holidays. I wanted to instill confidence into her from a young age and make her understand that being different doesn’t mean you are any less beautiful. As a parent you will naturally be protective and I knew I would have to be extra strong for her, so that she could deal with the potential challenges and judgement she may experience as an teenager and later, a young woman. I prepared myself for those times when she would come home and tell me that kids at school had said something spiteful about her skin. Being a ‘step ahead of the game’ makes dealing with those issues easier”.

    How did your parents react to your very first patch? Feel free to share…..

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