I’ve found Instagram a real treasure-trove for discussing and promoting positive mental health, body positivity and chats about vitiligo. I’ve now had vitiligo for over 25 years and it really knocked my confidence, but being able to follow such positive, inspirational people on Instagram can really help you feel part of a ‘vitiligo community’ if, like me, you feel conscious of your vitiligo and nervous about showing your patches. I still choose to cover my vitiligo, and that’s totally okay, but you want to embrace your skin and show it to the world, joining the vitiligo community on Instagram and following a few of these Instagram accounts can help you feel more confident and part of a supportive, understanding community.
Mohamed is obsessed with travel, engineering and sustainability… but he’s also a proud ‘vitiligan’!
Giih’s Instagram feed is packed with self-love and self-esteem! She shares lots of natural vitiligo photos.
British-Asian presenter and influencer Joti is a championing representation in the media. Her feed features herself and lots of other people with vitiligo and visual differences.
Mehak is Pakistan’s first vitiligo ambassador. Her content is bright, fun and inspiring.
AlexMimi is a makeup-lover and fur baby mum, so expect lots of cute pet pics and makeup ideas from her vitiligo-positive Instagram feed.
Kirps is a vitiligo advocate, model and actor. His Instagram feed is full of inspiring vitiligo photography. (Photo credit: @thedanclarke)
Los Angeles-based Claire believes in and promotes self-confidence. She thinks we should be proud of our vitiligo, and her beachy, summery photos definitely reflect that!
Natalie is a UK content creator and freelancer. She works with Stylist Magazine, Cosmopolitan and Dove, and she’s a Changing Faces ambassador. Her feed is full of lifestyle chat, body positivity, self-love and real talk!
Model Faried has great links with Vitiligo Awareness International (@vitiligoawarenessint) and he is brand ambassador for @vitiligo.awareness.store, so he posts lots of brilliant vitiligo photography. Faried also shares lots of videos from people around the world who have vitiligo.
Based in Germany, Hanni focuses on vitiligo skincare. She posts about skincare products, how to look after your skin, and self-care, which is such an important part of wellbeing that a lot of people forget about.
Sina is a vitiligo model in Germany. She posts unique photography of herself, focusing on her vitiligo and body confidence.
Jett is an actor and model with vitiligo. He posts great selfies and car photography but also some really inspirational quotes and affirmations.
A contemporary dancer and model, Anita shares lots of vitiligo selfies and dance photography. Her feed is inspiring and colourful.
Jovana has a great stories highlights reel on vitiligo beauty and feeling confident. She posts lots of fun selfies and motivational quotes.
There are so many more inspiring people on Instagram, and it’s a great place to talk about vitiligo and share your own journey with others. Try following the hashtags #vitiligonation, #vitiligosociety, #vitiliglow, #vitiligo, #vitiligopeople and #vitiligoworld.
I recently took part in Vitiligo Association Australia’s camouflage workshop via Zoom. If you haven’t heard of them, the VAA was founded in September 2010 for patient support, public education and the promotion of research into vitiligo within Australia. Anyone with an interest in vitiligo can join the VAA, which is a not-for-profit association.
At VITILIGLOW®, we have a large customer base in Australia as many people with vitiligo choose to cover up their patches before heading to the beach. The camouflage workshop featured a wide range of camouflage products and companies, and I was delighted to be asked to talk about VITILIGLOW®.
Speakers and experts in the workshop included camouflage expert Joanna Blair. She is a professional makeup artist, director of Joanna Blair School of Makeup and over 20 years of experience with paramedical camouflage makeup. Joanna teaches people with vitiligo how to apply camouflage makeup on themselves.
If you didn’t get the chance to join the Zoom meeting, you can watch the full video here:
Last week, Joti held an IGTV live session with me to discuss skin camouflage, covering up vitiligo and the background behind VITILIGLOW®. I first met Joti several years ago and I’ve been following her on Instagram ever since. Over a quarter of Joti’s followers on Instagram completely cover up and use a cover-up product like makeup or vitiligo camouflage, so clearly many of us feel the same about covering our depigmented patches.
In case you missed any of the live stream on IGTV, I thought I’d write up some of our conversation in this blog post about my honest experience with vitiligo and how developing and using VITILIGLOW® has given me back my confidence. You can also head over to Joti’s Instagram feed (@vitiligo_and_me on Instagram) to watch the live stream in full.
My vitiligo journey
I’ve now had vitiligo for over 20 years. My patches have developed over that time and I’ve lost around 70% of my pigment now. I choose to cover my patches, but there are a lot of people out there who are confident and choose not to cover their patches, and that’s totally fine. My eldest son has vitiligo – he has dark skin so it’s quite noticeable on him – and he chooses not to cover his patches. Whereas I’m quite the opposite – I always cover my patches. Joti also chose to cover up with full face and body coverage for 18 years. I know there are many of you who choose to cover your patches too.
Going back over 20 years, when I was first diagnosed, I had very little knowledge about vitiligo and very little experience of the condition. I didn’t know anyone with vitiligo. None of my family had vitiligo. When I was first diagnosed, I don’t think I really understood how it was going to affect me long-term. I started off with a really small patch on my wrist. It was only when another small patch came up on my other wrist in the same place – I had symmetrical vitiligo – that the doctors were finally able to diagnose it as vitiligo.
For the first few years, I didn’t really let vitiligo bother me. I carried on going out in the sun, wearing the clothes I’d always worn. It’s only when the patches started to spread and became more noticeable that it started to affect me and my confidence. It was at that point that I began my journey of looking for something to cover it up.
Be proud of covering up
Joti agreed that covering your patches can make you feel good. We shouldn’t be ashamed to say that we cover up our patches to feel more confident. I work full-time in healthcare and I want people to listen to me when I do a presentation, for example, and not just be distracted by my vitiligo and patches. For me, it’s easier to cover up and blend in with others!
Joti explained in our IGTV session that the idea of ‘fitting in’ isn’t just related to skin conditions. Many people feel the pressure to ‘fit in’ with others in society and on social media. It’s a topic that the Mental Health Foundation is taking seriously and they’re doing something about it. There are so many people who are dealing with this pressure.
The creation of VITILIGLOW®
This need to cover my patches led me to creating VITILIGLOW®. I wanted to create a product that is quick and easy to use on a daily basis. Traditional camouflage products are generally a three-step process; you have to use a primer, then a shade, then a setting powder or finishing spray, which can take a long time to apply. For me, with depigmentation increasing all over my body, I couldn’t do that every day. By the time I’d covered all my patches in that way, it’d be time to go to bed! So that’s why I wanted to create VITILIGLOW® – a product that is quick and easy to apply every day, doesn’t need any powders or setting sprays, and doesn’t rub off. It’s also water resistant. You can use VITILIGLOW® all over your whole body, and even on your face. I apply VITILIGLOW® every day to cover my patches so I wanted to make it good value for money.
Creating VITILIGLOW® has been an up and down rollercoaster with manufacturers and formulas – it’s taken a good few years to get to where we are – but the formula is the best yet. Even now, I’m still trying to improve the formula – I won’t stop until it’s the perfect product that we all deserve! I still work full-time because money from the VITILIGLOW® sales goes back into developing and improving the products.
Running VITILIGLOW® isn’t all about selling a product. It’s about supporting people; supporting those who want to cover up and supporting those who don’t want to cover up. We ran a successful #VitiliglowConfidence campaign on Instagram which celebrated vitiligo and people who choose not to cover up their depigmented patches.
If you want to watch the IGTV live session in full, head over to Joti’s Instagram page: @vitiligo_and_me.
June has been a very busy month for VITILIGLOW® with many customers buying our bundle deals in time for the sunshine. The weather has been so sunny, and it means that many of us like to cover up our vitiligo and wear short-sleeved tops and shorts without worrying about having our patches on show.
Today is the ninth World Vitiligo Day, which also means it’s exactly 11 years since Michael Jackson passed away. World Vitiligo Day was chosen as the 25th June because it’s the day of Michael Jackson’s death. Many say he was the most famous person to have vitiligo, but there are other well-known people with the condition, including model Winnie Harlow and chef Dean Edwards.
As always, World Vitiligo Day is a time for celebration of the skin condition but also a fantastic opportunity to raise more awareness. Even today, many people are not aware of vitiligo, or at least don’t know the facts about the condition, which means some people make uneducated assumptions. Some still even believe you can catch vitiligo from someone else, which you definitely can’t, and some think there is a link between vitiligo and leprosy, which there isn’t!
World Vitiligo Day is all about getting the interesting, true facts out there, raising awareness and educating about the condition. We all want to reduce the stigma that can be associated with it, and improve research into vitiligo.
Lots of people with vitiligo feel really confident in their own skin, and don’t give a second’s thought about going out with their vitiligo and patches on show. But there are also many of us who still feel conscious of the skin condition, and choose to cover up our patches. That’s why I created VITILIGLOW® as I couldn’t find a suitable camouflage cream out there that I could rely on.
As always, The Vitiligo Society have done a great job of running some brilliant events this summer for World Vitiligo Day, and the main National Vitiligo Community Conference, which is a Global Vitiligo Celebration in line with World Vitiligo Day, is being held on 26th to 28th June this year. It’s hosted by the Minnesota VITFriends family with the support of the Global Vitiligo Foundation.
World Vitiligo Day is a great opportunity to talk about vitiligo and get involved in some of the upcoming events, whether you attend one in person or join in the conversation on social media! If you’d like to share your photos, selfies or vitiligo stories with us at VITILIGLOW®, we’d love to hear from you, so please tag #VITILIGLOW in your social media posts. You can find us on Instagram, Facebook and Twitter.
I hope everyone is staying safe and well in these unprecedented times, and getting used to this ‘new normal’.
Happy World Vitiligo Day 2020!
Founder of VITILIGLOW®