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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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    6 Reasons why Vitiligo Shouldn’t Come Between You & Your Date…

    Ah! Dating! That wonderful topic that could consume an entire night during a dinner catchup with friends as you move from ranting about men, to later admitting you probably couldn’t really do without them (queue covering my eyes!). From bad dates, to blind dates to the amazing dates that lead to marriage proposals after 6 weeks (it happens!), dating isn’t dating if you havent got a good few stories to share….

    But what does dating feel like when you have a skin condition such as Vitiligo? For some it may overshadow the entire experiecnce, altering what we choose to wear and possibly, how we come across. I recall occasions where i’ve been on a date, having flirtatious conversation, fully engrossed in the person i’m with, but at the back of my mind I’d be waiting for the dreaded question that felt like it needed a drum role beforehand “So, what happened to your skin”? In that single moment, my confidence would crash.

    Vitiligo, or any skin condition for that matter, can sometimes make you feel like you can’t be yourself. Aside from the usual prep like ensuring your nails are pefectly manicured, to deciding how to wear your hair and what girly scent will send his senses a little wild, one of the hardest decisions to make is, what to wear. However, for us, as girls with Vitiligo, we sometimes have additional concerns, like ‘do I wear something that covers the patches on my arms‘ or ‘do I dress freely in something that I really like, but ultimately reveals my skin‘? I was always the girl that would cover up, often choosing skinny jeans, a blouse with long sleeves or a fitted blazer becacuse I was too self-conscious about wearing something that would show the patches on my arms.

    Thankfully, I’ve learnt a lot about dating over recent years and dress more freely when it comes to choosing what to wear. I’ve learnt a lot from guys I regard as good friends who have spoken honestly about women, dating and what their choices are based upon and I can assure you for the majority, it isn’t your skin. Here’s what i’ve learnt….

    Don’t let your skin define you

    Yes, your Vitiligo (or any other skin condition for that matter) is very much part of who you are and who you’ve become, 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 a guy 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. Your skin is apart of you, its not the only thing that makes you, you…..

    We are responsible for our own happiness

    Try not to have the expectation that part of the guys job is to make you feel good about yourself. Sure, its good to be with  a guy who knows how to compliment and appreciate you (this works both ways!), when you’re looking and feeling your best, but try to avoid feeling as though he should be your confirmation that you look good. I once believed it was a guys job to compliment and make me feel comfortable if I chose to wear a t-shirt or a swimsuit on the beach, but I soon realised i’m responsible for feeling good about me and any additional praise is a lovely bonus!

    Guys aren’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 all guys, but honestly, the majority are not worried about your skin. Imagine you’ve been talking for weeks, exchanging flirtatious one liners, feeling each other’s energy and you’re building on the feelings of a good vibe. Date night arrives. 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 ‘nowhere’…

    I remember catching a guy staring at my hands once. He was incredibly hot, so the shear thought of his eyes transfixed on my porcelain white hands almost made me crumble. Seconds later, he took my hand in his and told me how beautiful they were and then proceeded to tell me how his cousin developed Vitiligo when he was 12 years old. It made me realise how negatively assuming my thoughts can sometimes be and just how often I think the worst when really they could be thinking the opposite. For me, it really broke the ice in the most endearing way. I valued the honesty and the openness which made me reflect and realise just how important it is to be yourself.

    Confidence is way sexier than anything else. 

    As women, we like confidence in a man….men like the same…and believe me its all the rage these days! If you look around you especially on social media, there are endless advocates and influencers promoting body confidence and embracing all that we are aesthetically. Now, I’m not saying that all guys are open to dating girls that embrace their their uniqueness (it’s there loss, right?), but a large percentage love a girl that loves herself. The girls that are content and accepting of who they are the ones that are probably quite fun to be around.

    If you’re content, comfortable and realise your own self-worth, then a guy will see those things you see. If you’re someone who isn’t comfortable in their own skin and expresses that, not only can it put pressure on a relationship but it can become hard for a guy to convince you that you are a beautiful person…..especially if you don’t believe it yourself. Its your skin, wear it with pride.

    Don’t make any assumptions

    Don’t make any assumptions on 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 on in 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 are straight away, others might way until the 5th date down the line. Accept that’s what it is.

    Ive stopped looking at it too deeply. If he doesn’t ask, im open to the fact it doesn’t bother him. Im also open to the fact that he will ask someday, but for now he isnt getting to know my skin, he is getting to know me and my potential as a partner (and vice versa).

    Promise yourself this

    The next time you are getting ready for a date, focus on the things that are important. The things that are happening in the current moment – for example what you feel like wearing, whether you nails match your outfit and which scent leaves the best trail behind you, because they are the things that are instantly notable and appreciated.

    Nerves are natural and expected for girls like us….even for the those most confident. As is, changing your outfit three times because you can’t decide whether the peplum top looks better than the cold shoulder top, 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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    6 Vitiligo Related Instagrammers You Should Follow in 2018!

    From Vitiligo Beauty that globally champions those with Vitiligo, to the unique beauty bloggers who demonstrate how to highlight and enhance their Vitiligo rather than conceal it, there are endless Vitiligo groups, bloggers, models and advocates that you should be following on Instagram, if you aren’t already!

    Social media is incredibly powerful when it comes to bringing stories to life and capturing moments in the simplest way. I only found that out in 2015, five years after it was born! Discovering the different groups and profiles on really opened my eyes to just how many people in this world have the condition and how open they are with it. I loved that it opened the ‘gateway’ to communication globally and allowed for honest and truthful discussion with the real people at the heart of the condition.

    I’m never massively been into social media and so the thought of creating another social media platform, with the added pressure of taking photos that were instagram worthy, felt like a stressful chore that I had no interest in investing time in. That changed when I caught a glimpse of a group of girls lazing on the beach in Santa Monica (one of whom had Vitiligo) that I realised just how influential and visually appealing photos can be! A short while after I had created my own profile and was scrolling through endless holiday snaps so that I could start building followers and of course, tracking down and following all the Vitiligo related groups!

    Now, as I call myself a committed Instagrammer, I share with you my top 6 favourite Vitiligo groups and advocates that I recommend you follow;

    Living Dappled

    Formed in 2016 by Erika Page, the Living Dappled movement is the Vitiligo page for girls, women and children. Living Dappled has a growing community of followers that allows for support and encouragement amongst each other, and the follower traction is quick! It is great for initiating conversations, opening discussions and getting you thinking about the many journeys those with Vitiligo face. The photography is clean, simple yet visually striking.

     The Vitiligo Society

    The Vitiligo Society is the UK’s only charity aimed at supporting those with Vitiligo and providing the latest updates on research, treatment and the management of the condition. Formed in 1984, the long running charity has a strong network of medical professionals that support the work in which they do. Their Instagram page, which was formed in February 2016, has attracted over 1200 followers so far and its not even been 12 months yet! Their page consists of inspiring photography with stories that outline the different issues; challenges and pathways people have faced with the condition.

    Vitiligo NL

    Based in the Netherlands, Vitiligo NL is the official account for the association that was formed in 1990. With great photos and captions to support, it’s a key group to keep track of and tag yourself in if you’d like to be featured.

    Laur_elyse

    Lauren Elyse has been called many things….baddass, talented & wow worthy! With more than 307k followers, she is one of the most influential makeup artists associated with Vitiligo. Her unique makeup skills which showcase some striking looks include peridot eyes, sea witch lips and peachtwist cheeks. A makeup artist like no other!

     Vitiligo Beauty

    With a following of 14.5k, the page name gives away exactly what this group is dedicated to….an array of beauties with the condition. This page is simple, you post, you tag and they share. Get your pictures posted!

    radiantbambi

    Better know as Ashley Soto, this is the girl that literally has the world painted on her body! She emerged in 2017 when her story was shared with the likes of The Daily Mail, Cosmopolitan and Allure and since then she has gained recognition for her positive outlook and the love she has for her body! She is a body positive activist and has even recreated her body through famous artists such as Van Gogh.

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    Reflecting on the stories of 2017

    Let’s be honest; 2017 was a pretty good year for raising awareness through the stories we openly shared via social media, on TV and in magazines and newspapers. So before we take a positive step into 2018; its worth taking a look back at some of the momentous stories that were shared throughout the year, revealing some insights into living with a skin condition like ours.

    Here are 7 memorable features and stories from 2017:

    Artist creates dolls with Vitiligo to show children that diversity is beautiful

    These dolls created by Kay Customz are not only stunning, but send out a strong message to kids; that we are all beautiful and no one should be excluded. Inspired by Winnie Harlow, these dolls show that diversity is something to celebrate.

    Vitiligo: My Journey Through Art

    I was truly saddened by the treatment of Raki Chaki who was subject to many forms of treatment as a result of the stigma of Vitiligo often connected to those from an Indian background. I was inspired by how she finally learned to give her skin a voice….

    At Last! Whether you suffer from acne, psoriasis or Vitiligo, there’s a new suncream that works for your skin

    Wearing suncream has always been high on the agenda when it comes to protecting our skin during the summer months. However, questions have always been raised around which SPF we should use and which brands offer the best protection against the sun. In August, in an article written for the Daily Mail, a number of best buy products were tested and recommended for skin conditions such as Vitiligo.

    New transplant restores colour to skin damaged by Vitiligo by taking pigment cells from unaffected areas before stimulating them with a laser

    This informative and detailed article which featured in the Daily Mail discusses Vitiligo, the different treatment options and pigment transplant surgery RenNovaCell, a type of treatment that stimulates pigment cells.

    The women who described herself as the ‘human oreo’

    Sharekia Winston developed Vitiligo just months after giving birth to her daughter. In this moving story, she tells of her journey from diagnosis to self-acceptance.

    Winnie Harlow just made the most important point with this nude selfie

    Remember when Kim Kardashian broke the Internet when she appeared on the cover of New Yorks, Paper magazine in 2016? Well, to us, this is exactly what Winnie done when she released a naked selfie on Instagram in August!

    Striking a dramatic pose in nude underwear, Winnie simply slayed in the photo taken as a reflection in the mirror and finished it off with a very strong message to all her followers….

    This adorable little girl is teaching everyone a lesson

    A great feature to finish off the year! The story of six year old Maya Johnson who rocks confidence and doesn’t let her skin go unnoticed on Instagram…

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    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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