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What Beach Freedom Looks Like For a Girl With Vitiligo

Lazy days on the beach or simply enjoying time by the sea is something many of us relish in the idea of. I know it’s something I look forward to every year. But for girls like us, the thought of the beach and wearing swimwear can often leave us feeling a little nervous and vulnerable.

I’ve had vitiligo for more than 30 years and for me beach holidays with friends in my early twenties is something that will always stand out as something I found challenging. Despite my anxieties at the time, I tried to look beyond the thought of others staring at my skin so that I could enjoy being on a summer break like everyone else did.

Getting to where I am today and allowing myself to wear a bikini by the pool took an untold amount of work on myself. Developing a healthy mindset was the baseline for improving my confidence whilst allowing myself time and most importantly, changing how I felt about my own body.

Here are some of the things that helped me to build my confidence on the beach;

Not feeling bikini shame

One of the hardest things about being on the beach was wearing a swimsuit that revealed the patches on my skin. Building the courage to look past the stares and the feeling of being judged was never going to be easy. However, practicing positive self talk reminded me how resilient I was in coping with difficult situations. Telling myself that ‘I’ve got this’ and ‘don’t let others get in the way of your happiness’ really helped build my confidence, strength and ability to let go of how I thought others perceived me.

When you practice self love and learn to appreciate yourself for who you are, it completely changes how you react to others because you realise that your feelings come first and even though other people’s opinion of us can impact how we feel and make us feel vulnerable, ultimately those opinions aren’t important as they don’t define who we are.

Being able to manage the stares

Whether you’ve had vitiligo for 5 months or 5 years the feeling of someone staring at your skin will always create a feeling of discomfort. Sadly, it’s the reality when you have a visible skin condition.

When you feel someone staring so many thoughts can takeover. Is the person judging me? Are their thoughts negative? Do I look unattractive? Often these thoughts can make us overthink and leave us feeling uncomfortable and anxious.

Managing the stares takes time and whilst it will never be an acceptable form of behaviour the reason for it is because people are curious when they see something new or someone different. Giving some leeway to those that might be curious can be a way of managing how it makes you feel. Over the past few years my response to staring has changed. Rather than look away in embarrassment now I smile at the person or if the opportunity is there i’ll engage in conversation so that I can explain what vitiligo is.

Ultimately, it has taught me that, whilst we can’t change the behaviour of others, we can change how we respond to it. For me, this has meant putting the stares secondary and my confidence and happiness first.

Going without cover up

Deciding to go without camouflage makeup or any other type of cover-up is a huge step for anyone. Many of us have spent years using camouflage makeup, high street makeup and tanning products as a way of disguising our skin so the thought of transitioning to wearing nothing at all is often a scary one!

For me, going without coverage didn’t happen overnight. It was a gradual process that meant me slowly removing the layers until I was comfortable with not wearing anything at all. I also made a habit of telling myself that I didn’t need to cover my skin to be accepted.

Wearing less fake tan so that my skin was more visible and going without makeup on my face felt incredibly freeing. The stares didn’t stop, but the negative self talk did. Time is key and so is feeling comfortable so it’s important that you take small steps towards wearing less coverage if that’s something you want to do.

Not needing an alley for security  

I can recall on a number of occasions during a visit to the beach wanting someone to be with me whether that was my Mum or a close friend. Not only did it act as a distraction from me thinking about my skin, but it also made me feel protected. It made me feel comfortable and helped me to find the courage to step outdoors in a pair of shorts or wear a swimsuit around the pool.

Going without an alley is a big step towards building your self confidence and accepting that you are comfortable with who you are allowing you to alleviate the feeling of wanting someone to protect you. Now, when I’m with family or friends on holiday I know it’s because I enjoy their company, not because I want them to make me feel safe.

Feeling confident in a swimsuit took time, perseverance and courage and whilst it was hard to visualise what beach confidence looked like, I proved to myself and hopefully others just what beach freedom looks like.

The secret to self-confidence isn’t to stop caring about what people think, it’s to start caring about what you think. It’s to make your opinion more important that anyone else’s.

Vitiligo and Self-esteem: how to support and connect with others in the community

Whilst vitiligo isn’t a life-threatening condition, it certainly has the potential to change your life, and many of you reading this will understand why. Firstly, there is the visible side of vitiligo and how it prevents us from fitting in with societal norms when it comes to our outer apperance and secondly, the psychological impact such as feeling isolated, ashamed and experiencing a sense of social anxiety. Living with vitiligo can severley affect our self-esteem and can lead to mental health problems because of the many associated feelings linked to the condition.  

Despite this, there are strategies you can adopt that can make living with vitiligo easier for you, particularly where confidence is concerned. Finding a community of people who understand and can support you, can make all the difference in how you live with the condition, whether that’s online interaction or in person support.

How does vitiligo affect your confidence?

Many people mistake vitiligo as a purely cosmetic condition. But since the majority of societies around the world place enormous emphasis on physical appearance, looking different can have a huge impact on someone’s self-esteem and how they feel about themselves.

Low self-esteem is common in people with vitiligo and this is often because of the highly visible nature of the condition and how unpredictable it can be. As we know, vitiligo an affect any part of the body and knowing that patches can show up at any time and anywhere, can often be difficult to accept and can leave many of us living in fear. For some of us, it can lead to us feeling unattractive and undesirable, making us compare ourselves to those who aren’t affected by the condition.

The concerns someone may face around the appearance of vitiligo can lead to the avoidance of social situations with friends and it can also interfere with dating and intimate relationships. But with the right support and focusing on an inwards mindset, it is possible you can successfully manage such challenges and potentially overcome them, allowing you to enjoy a more fulfilled life. Here are some ways that can help you do that;

Join group sessions

As previously mentioned, social isolation can be common amongst those with vitiligo which can impact how we see ourselves and how confident we might feel meeting others and being in new social settings. Guided group sessions give you an opportunity to connect with people who also share those concerns, who understand what you’re going through and have had similar experiences. Not only does this help you to feel less alone, but it also provides you with regularly scheduled contact with others, whether it’s walking groups, social activities or crafting nights. This can have a positive impact on your wellbeing because it can build your confidence, make you feel part of a unique community and can even create an opportunity for you to potentially learn something new!  

Get involved online

Online platforms may receive criticism for being impersonal, but they can also be a very helpful way for people to find communities and make friends. Finding people in your everyday life who have vitiligo can be challenging, which is why online spaces can be so useful.

From community Facebook groups and online forums that create a safe and open space for those with the condition to share their experiences, to the growth in ambassadors and influencers using social media to raise awareness and show the beauty in their skin, there are so many ways in which you can connect and communicate with those who share something unique with you. Such forums and the significant growth in social media have also made it possible to connect with people from across the globe which has lead to a real and very special global community feel. Given the exposure of vitiligo in recent years, it has meant that reaching out to others has never been easier and often those with the condition welcome new connections and conversations because they understand what it’s like to have vitiligo.

Join non-profit organisations advocating for education

Raising awareness of conditions such as vitiligo is essential to reducing the stigma and helping people understand the condition, which in turn can help us feel less alone or ostracised because of how we look. The more social awareness there is, the less we feel the need to explain what it is and the more it becomes familiar in society.

Non-profit organisations and charities can be a great resource for education and implementing a change of thought, but those looking to support people with vitiligo can also help by getting involved with campaigns, events and fundraising, all of which support the importance of raising awareness of the condition and everything associated with it.

Become an advocate or encourage those closest to you, to become one!

Whether you have vitiligo yourself or know someone with the condition, it’s possible to become an advocate to show your support. You might have a friend, a relative or a colleague who has the condition – ask them if they’d like to do something together to raise awareness of vitiligo such as hosting a fundraiser, using social media to raise awareness or even getting involved in World Vitiligo Day, which is the biggest global event in the calendar every year. There are so many ways you or those closest to you can become an advocate, whether that’s by sharing your story, engaging in social media, wearing a vitiligo t-shirt or joining a support group.

Every voice matters when it comes to raising awareness and you and those closest to you are what’s needed to advocate change.

Final thoughts

There’s real power in supporting others, no matter the cause, and whether you’re someone who lives with vitiligo yourself or you want to support someone you know, finding ways to help people feel less alone can be a wonderful thing to do.

Just discovered your child has vitiligo? Here’s what helped us….

I clearly remember when I first suspected my son had vitiligo. It was just before his second birthday and I saw one spot appear on his chest. At first I wondered if it was fungal but less than a month later his neck had pretty much fully depigmented. At first, I did absolutely nothing. Looking back, I was in a state of denial and shock. No one in neither mine nor my husband’s family have vitiligo. My only knowledge of vitiligo was that Michael Jackson had it. I had no experience in understanding how it would make my son feel or how I might feel long term.

When the initial shock wore off, I realised I needed to do something. My son was scheduled to be seen by the GP for a completely unrelated matter and I decided to ask about his skin whilst I was there. I wasn’t prepared, I had no pre-planned questions and no expectations as to what the conversation might be. I was still pretty lost. Whilst there, I showed the GP his neck and the response was…yes that is vitiligo. On hearing the words, I instantly wanted to know if he would grow out of it, so I asked. The response was ‘maybe, although it’s highly unpredictable’. So I walked away feeling more lost and confused than when I walked in.

What followed next was months of fighting and struggling to get my son seen by a dermatologist. Where I lived, there was a shortage of dermatologists (even pre Covid) and I was told (in no uncertain terms) that if it’s not cancer, he wouldn’t be seen which was very frustrating. I was eventually successful in getting him to a dermatologist (unfortunately it required me taking him privately and then getting referred by the private dermatologist to see the NHS one). My son is now under the treatment of a team of dermatologists and so I’d like to share some of things I experienced as part of getting him diagnosed.  

Preparing to see your GP

If you suspect your child has vitiligo, the first step is to see a GP to get an official diagnosis. Depending on the age of your child, you may want to explain beforehand that this first appointment is to confirm the diagnosis and get as much information as possible. Asking questions around treatment can sometimes make the child feel that you may think something is wrong with them.

Before going, I recommend writing down all the questions you want to ask as it can be overwhelming when you are sitting opposite your GP trying to digest the diagnosis. If your child is old enough, you may want to work on the list together to make sure all of their concerns are addressed as well. Unfortunately, not all GP’s are forthcoming with information, which is why you want to be prepared as much as possible.

Here are some questions you might want to ask:

What are the possible causes of vitiligo?Do I need to look out for any other symptoms related to Vitiligo?Does my child need to take any tests to confirm the diagnosis?Is this condition temporary or long term?Can my child be susceptible to any other conditions because of their vitiligo?What treatments are available, and which do you recommend?What are the possible side effects of the treatment options?How long would the treatment need to be taken for and how frequently?Are there alternatives to the primary approach you are suggesting?Are there any restrictions that I need to consider for my child (for example, avoiding the sun at certain times)?Can you recommend camouflage or self-tanning products?Are there any brochures or other printed material that I can take home? What web sites do you recommend?

Don’t hesitate to ask additional questions during your appointment if you feel like you don’t understand. Every question you have, during which might be a difficult period, is valid.

What to do after diagnosis

Once the diagnosis has been confirmed, take some time to talk to your child about vitiligo. Depending on their age, it would be good to have the conversation with them about whether or not they would like to seek treatment. It is a balance between exploring treatment options whilst not applying pressure so they feel their skin is something that needs to be ‘fixed’.

If the decision is made to move forward with treatment, the most common treatment for children is a mixture of steroids and protopic topical treatments. It is good to be prepared to ask about the side effects as well as length of treatment and safe uses and applications. If your child has other skin conditions (such as eczema) remember to ask about the order of application of the creams so that it doesn’t interfere.

Until recently, Vitiligo was considered a rare disease and therefore there are many people that don’t know about it or don’t understand. A lot of teachers, students and other parents may have no experience at all with Vitiligo. Therefore, it may be good to talk to their teachers and the school to help educate the class and other students about Vitiligo. Letting people know that it is not painful, and it is not catching can make a big difference in your child’s experience in their school. Other students may simply be curious and ask questions, but this may make the child with vitiligo feel self-conscious or singled out. So, initiating the conversation and being open may eliminate some potentially negative situations for your child. Of course, your child must be comfortable with this approach before you do it.

Ultimately if your child is diagnosed with vitiligo, the most important thing is to support them. Educate them on what that means and give them the confidence to respond if people ask questions or stare. Remind them that they are beautiful, unique, and special just the way they are. Their skin is just one aspect of what makes them, and it doesn’t define them.

Also, know that as a parent you are not alone. There is a global vitiligo community there to support you.  

If you would like to gain further support and connect with parents who have children with vitiligo, you can join our Parent Support Network Facebook group: https://www.facebook.com/groups/245356819789785

News

Join us as we celebrate World Vitiligo Month 2022

On 24th June, at 7pm our trustee Natalie will be hosting a number of incredible speakers sharing information, tips and advice on how to live well with vitiligo. 

‘The connection between lifestyle, nutrition and mental wellbeing’

Kay Rai, Registered Nutritionist

Kay has personally been diagnosed with multiple autoimmune conditions including vitiligo. After seeing first hand the effects of adapting to healthier food choices had on her health, she   enrolled to study at the London College of Naturopathic Nutrition (CNM) to understand more. Armed with clinical practice and a deep knowledge of nutritional science, Kay launched Inspire Nutrition to help others through their health battles. ​

Following her recent VitLife article, Vitiligo & Mental Wellbeing; Food, Mood and Gut’, Kay will explore the connection between lifestyle, nutrition and mental wellbeing.

‘The Power of Community’

Erika Page, Blogger & Living Dappled Founder

The founder of Living Dappled, the #1 women’s lifestyle blog about vitiligo, Erika Page got vitiligo as a child and ultimately lost 100% of her skin’s pigment to the condition. Erika Page serves as the editor and spokesperson for the brand. She has spoken at the U.S. World Vitiligo Day conference and has been featured on DermHealth.Co’s Heal Thy Skin podcast, Channel Kindness and The Pretty Pimple. In 2021, Erika Page was named the #4 most influential vitiligan for the second year in a row through a survey conducted by Unite for Vitiligo. 

Erika will share her personal story about connecting with others with vitiligo and why this can be such a powerful, transformative tool for finding healing and confidence when you live with vitiligo.

‘Vitiligo Camouflage and Coverage Techniques’

Nina Brown, Camouflage Practitioner at Changing Faces & Beauty Therapist.

Nina has 37 years experience in the beauty industry, and her career spans many fabulous therapies and experiences. She is most passionate about providing treatments and services which give confidence, making a difference to the way we see ourselves. As well as working in theatre makeup she has also lectured in Beauty and Holistic Therapy, Electrical Epilation and Media Make-up. 

Nina will be talking about the use of camouflage in giving us a choice over our appearance and a sense of control over how we want to look day to day. She will discuss the use of different coverage techniques in building confidence and self-esteem so that we feel empowered to lead the lives we want.

‘Feel confident with your vitiligo this summer’ 

Natalie Jones, Coach at Every Body Beautiful

After developing Vitiligo and feeling low self worth and confidence as a result, Natalie spent the past decade researching how to heal her skin and restore her confidence. She studied how nutrition, lifestyle habits and mindset work together to support and nourish our skin. Along the way, she gained valuable insight into what really matters most when it comes to the wellbeing of our skin and truly being happy in it. She felt so passionate about sharing what she’s learned to help others with skin conditions, she trained to become a coach and now enjoys sharing her unique approach to help skin journeys feel easier.

On World Vitiligo Day, Natalie is excited to share some helpful tips for feeling more at ease in our own skin during summer. Natalie understands how we can have mixed feelings about revealing our skin, so she wants to share some key mindset strategies that helped her shift her attitude towards summer so she could actually enjoy it more freely again. Natalie believes we all deserve to feel good in our own skin and she’s excited for you to feel more at ease this summer too!

Register for our free event here: https://viti.li/22

Vitiligo Live Chat & Virtual Drop In Service Launched

Last year the Vitiligo Society embarked upon a series of initiatives to provide accessible and active support to its community members. We recognised what a challenging and perhaps lonely journey vitiligo can be, and how important a space that enables individuals to connect with one another is. 

After trailing a peer support meeting on the 23rd August 2021 we listened to feedback from our members and volunteers. Following this we applied for funding to help us launch a live chat service and virtual drop in sessions. We were delighted when The National Lottery Community Fund awarded us £8,480 to launch these services in 2022.

These new services will allow us to provide an immediate point of contact to empathise, understand and signpost our community to reliable information.

We believe that this service will allow us to support people early on in their diagnosis, linking them into a community for long-term support and intervening before the psychological effects of living with the skin condition become too difficult.

The above sessions will be open to anyone who has been impacted by vitiligo in some way. Whether you have been living with this condition, in the middle of getting a diagnosis, or a concerned family member.

Dale Biermann, the trustee leading the VitChat initiative, explains more about the service:

This service was started with the intention of being able to be a ‘go to’ for anyone who wants to talk to someone about what they are going through and be able to get through to them immediately. In a world where digital communications are the primary way to communicate, we saw the need to be able to get immediate responses from the Society in order to feel at ease and get direct access to a wealth of information. This is a service that I wish was available when I was going through the emotions of having vitiligo. Remember, you are not alone out there.

Abbie Hurrell, Charity Director for the Society and lead contact for the Virtual Drop In Sessions added:

The virtual drop in sessions compliment our live chat initiative perfectly. Our Society isn’t large enough to host local face-to-face support meetings, so a drop in session where people from anywhere around the UK can have a chat with others living with vitiligo is the perfect solution. Someone from the Society will always be there to help signpost people to information or answer questions about our work. It’s so important that people have a support network early on their diagnosis so they can get access to reliable information and not feel too isolated by their condition.

You can find out more about both services by visiting: vitiligosociety.org/our-support-services

Please note: the sessions will not be run by trained professionals (doctors/ psychologists), if you have a query that requires support from trained professionals, then email us at: hello@vitiligosociety.org.uk.

Vitiligo bears are on their way!

In April 2021 we received incredible news that the Aviva Community Fund had chosen to support our Vitiligo Bear Project.

Over a 40 day period our crowdfunding campaign attracted 159 pledges, raising an incredible £4,418, smashing our original target! Not only did we help secure the funds we need for the project, we have helped raise awareness of the condition too.

We are now absolutely delighted to announce that the bears are now on their way to us and will soon be available to purchase through our shop! 

What is the bear project?

We know that being diagnosed with vitiligo can be life changing and really tough. For children, it can be even more difficult. Currently there are so few toys out there designed with kids who have vitiligo in mind. 

The project is to design and manufacture a teddy bear that children with vitiligo can identify with. The teddy’s fur will mirror the patches that vitiligo causes in skin.

Why is the bear project important?

Manufacturing this toy and making it available will help to:

normalise the condition for young peopleprovide an educational tool when a child explains their vitiligo at school or to friends and familyoffer comfort to a newly diagnosed child 

The money we raise here will be used for the design and production costs of an initial batch of bears. The bears will be made available via our (soon to be launched) online shop and then money raised from the distribution of these will allow us to make more bears available and help support the work we do.

There has never been anything like this for children with vitiligo.

How did the Aviva Community Fund help?

Aviva gives all it’s employees £25 to pledge to a project – £1,300 of the funds we raised came from these employees. In addition, Aviva gave us the platform on which to crowdfund and mentored us through the process.

What happens next?

Now that the bear designs are on their way to us, we’ll be making them available to purchase as soon as they arrive. All the money produced from the sale of our bears will help us produce the next batch and also support our services, research and mission.

You can visit our shop here: https://shop.vitiligosociety.org

Be notified as soon as the bears are available by subscribing to our newsletter.

Update on Incyte’s Ruxolitinib Cream Review

On the 14th March 2022 Incyte announced that the US FDA will not meet the Prescription Drug User Fee Act (PDUFA) action date and has therefore extended the review period for Ruxolitinib cream for the treatment of vitiligo by three months to 18th July 2022.

About Ruxolitinib Cream

Ruxolitinib cream is a cream formulation of a selective Jak1/Jak2 inhibitor, already approved for use in the US for the treatment of atopic dermatitis. 

Since late 2021 we have received promising updates from phase 3 trials for Ruxolitinib cream, for the treatment of patients aged 12 and over with non-segmental vitiligo with facial involvement.

Why a delay?

The FDA extended the review period to allow for time to consider additional data provided by Incyte. This additional data constituted a ‘Major Amendment’ to trial information and as such resulted in this extension to give the FDA additional time to conduct their review. The FDA did not raise any concerns related to the safety or efficacy of Ruxolitinib cream.

What does this mean for people in the UK and around the world?

Incyte released the following statement with the announcement: 

“We are confident in the data from the TRuE-V clinical trial program which supports our sNDA submission for ruxolitinib cream in vitiligo, and we look forward to bringing this innovative topical treatment to patients with vitiligo in the United States for whom there are no approved therapies that address repigmentation,” said Steven Stein M.D., Chief Medical Officer, Incyte.

When we last spoke to the Incyte team in Europe they were expecting to be able to share news about the potential use of Ruxolitinib in the UK with us towards the end of 2022. With the FDA delay announcement, it’s likely this timeline may have shifted a little, but we will share more information as soon as it is shared with us. 

How can I find out more information?

Dr Harris produced a useful summary from the phase 2 trials which shows some of the results that the trials provided patients, click HERE to read his blog

Click HERE to view the full Incyte announcement

We work in partnership with Incyte in Europe, click HERE to subscribe to our newsletter to be kept up to date with more information and announcements, and HERE to donate to support our work.

Vitiligo Society welcomes young ambassadors

It can be difficult for you, as a parent or carer, to talk to your child about vitiligo. This may be because you have your own feelings about the condition, or because you were not aware of vitiligo and it feels so full of unknowns for you.

As a parent, you will naturally want to get the best treatment for your child and try every medical option open. However, you need to be aware that your efforts to find a treatment may be misunderstood by your child. It is possible that they may think that this means you are ashamed of their condition and this can cause further difficulties if treatments prove not to be as effective as you had both hoped.

Whether you are treating your child’s vitiligo or not, we believe in the power of children seeing peers with vitiligo being able to thrive and embrace their unique appearance. Our Society is really fortunate to now introduce a team of incredible young ambassadors who are unafraid to show their spots, speak out about their vitiligo, and share words of encouragment for other kids to feel proud to do the same!

Meet Nikayah, she’s 9 years old and very happy with her unique skin…

“‘You are beautiful!’ Is what most people say to me when they see my light patches. My name is Nikayah and I am 9yrs old. My mum noticed my first light patch when I was 2 yrs old. She didn’t think much of it until more appeared 2yrs later. Some of my light patches are in my hair which makes my hair turn grey! How cool is that!

My light patches are a constant reminder that we are all beautiful and unique. By talking about Vitiligo we can spread awareness and promote a positive self image for us all. I am so happy in the skin that I am in… Even though some have disappeared or become smaller, I want them all of my light patches to come back.  I never want my light patches to go!”

Follow Nikayah’s journey on Instagram: @his_workofart

Meet Charlie, he’s 9 years old and enjoys drawing, swimming and football…

“I was about 4 years old when I noticed a small white patch on my chin. Then it spread and a new spot appeared on my neck. At the beginning, I wanted it to go away. I didn’t think it suited me and I just wanted my normal skin back.

Now I’ve had vitiligo for a few years, I think it makes me feel special. It is part of who I am and it makes feel important. I think it’s important to teach others about vitiligo so that people don’t make fun of them and so people don’t feel embarrassed about having vitiligo. I feel really happy and positive about my skin now. Don’t be afraid to show your patches. People might have questions about your patches and you can explain what it is and be proud!”

Meet Darnay, he is 10 years old and enjoys tennis, gaming and looking after his little sister…

“I developed vitiligo at the age of 7 and I’ve never been ashamed of my patches.

I think that my patches are really cool and resemble a superhero mask. People stare all the time, but it doesn’t bother me at all and it just gives me extra strength.

I say vitiligo shouldn’t change the way you are, it should give you more confidence. I think my vitiligo makes me unique.

Wear your parches with pride. Look in the mirror everyday and tell yourself you are beautiful. Hold your head up high. If people stare, let them stare. They are just fascinated with your uniqueness.”

Follow Darney’s journey on Instagram: @darns2012

Meet Lizzy, she’s 7 years old and was diagnosed wih vitiligo when she was 5…

“I would tell kids who get diagnosed with vitiligo not to be scared or worried. I told my friends that I have vitiligo and explained what it was just in case the saw one of my spots and worried about me.

I told them that vitiligo is on contagious and doesn’t hurt me at all.

I love the kids I’ve met through the Vitiligo Society. Vitiligo has helped me make new friends all over the world!”

If you are a parent with any questions or concerns about your child’s vitiligo then please email our team parentsupport@vitiligosociety.org.uk

Mental Health and Skin Conditions Report to be debated in Parliament

What is the Report?

In 2020 the All Party Parliamentary Group on Skin published findings from its latest Inquiry into mental health and skin disease. An inquiry that The Vitiligo Society was involved in shaping on behalf of the UK vitiligo community.

More than a dozen leading doctors, specialising in dermatology and mental health led the report, as well as patient organisations, and the dermatology specialist groups, the British Association of Dermatologists, the Primary Care Dermatology Society, and the British Dermatological Nursing Group.

The aim of the report was to gain insight into the state of mental health services available to patients with skin conditions in the UK and the psychological impact of these conditions. It is divided into chapters that aim to cover every aspect of mental health and skin disease, ranging from the design and commissioning of services to healthcare professional training, research priorities and patient advocacy.

When will the debate take place?

Sir Edward Leigh in his capacity as Chair of the APPGS now been successful in his application for a Westminster Hall debate on the APPGS report on Mental Health and Skin Conditions published in 2020.

This will take place next Tuesday 25th January at 4:30 pm and continue to 5:30 pm so there will be space for other speakers and of course the Minister’s response.

How can I watch the debate?

The debate is only open to MPS and visits to the House are currently suspended but it will be available to be watched on Parliament TV  https://www.parliamentlive.tv/

Why is this important for people living with vitiligo?

It’s hugely positive for dermatology issues such as this to be discussed in Parliament, and we can hope that it raises awareness amongst leaders of the importance of mental health support for people living with visible skin conditions, and well as highlight the need for investment in research.

If you need a copy of the APPGS report, you can find that on the APPGS website  APPGS – The All Party Parliamentary Group on Skin

Fundraiser runs 33 marathons in 2022 to support The Vitiligo Society and Diabetes UK

Harry, 33 from London is running an incredible 33 marathons this year to raise money to support The Vitiligo Society and Diabetes UK

The Vitiligo Society, like many charities, relies on the public for it’s support. Fundraising volunteers, along with our members, are what enable the Society to support community & research, educate and raise awareness about vitiligo.

Harry shared with us why he had chosen to undertake such a huge challenge:

2022 will be 30 years since I was diagnosed with Type 1 diabetes and 3 years since I was diagnosed with vitiligo. To commemorate the milestone, I’ve taken up the challenge to raise money for Diabetes UK and The Vitiligo Society by running 33 Marathons throughout the year (that’s 2 to 3 marathons a month!)

Both charities are fantastic in educating the public and supporting people like myself in managing and living with the condition. My aim is to raise equal amount of funds between both charities by my last run on 31st Dec 2022.

You can help support Harry by donating to his fundraising page: www.justgiving.com/fundraising/3322vitiligo and follow his story on his instagram page: instagram.com/33marathons2022.

Find out more about fundraising for our Society by visiting our Fundraising Page

Can you complete the 500km challenge?

Are you looking for a challenge in 2022?

The Vitiligo Society have teamed up with Virtual UK Runner to bring an incredible 500km challenge to help support the vitiligo community. The Society is calling for people to walk, hop, skip, swim, cycle or run 500km in 12 months. It’s a brilliant way to get fit, enjoy some fresh air, and help support our work!

How to sign up

Virtual Runner UK have allocated The Vitiligo Society 300 places for this race. Entry is £14 and includes a free participation medal.

You can register through the Virtual Runner UK website by following the link below. Registration is really easy and takes less that 5 minutes.

Sign up at Virtual Runner UK

How virtual running works

Virtual running works exactly the same as any other type of running but the difference is that the entered race can be run at any location, at any pace, inside on a treadmill or outside in another country! All you have to do is enter a race and provide evidence that you have done it. That’s it!
Virtual races are a great way to stay fit and active all year round, run for a good cause and get awesome medals for your participation!Virtual Runner UK will help you track your progress and see how all the other Society runners are getting on!

How to raise extra money through sponsorship

You can find us on the JustGiving website and set yourself up a fundraiser profile there – just click on the link below. Alternatively, you can contact us to request one of our fundraising guides or for information on how to raise sponsorship offline.

Find us on JustGiving

If you have any questions then please email us: fundraising@vitiligosociety.org.uk

Finally, don’t forget to share your snaps and tell us what you think of the challenge!

Society helps publishers create children’s books to promote inclusivity and awareness of vitiligo

You may remember our work earlier in the year in supporting a Kickstarter project, a new book ‘Ready of an Adventure’ which featured a character with vitiligo. Our Parent Support Network helped shape and offer feedback on illustrations to ensure that vitiligo was accurately represented. We then featured the book and it’s fundraising campaign in one of our VitLife articles, which you can read HERE.

Following this we were also contacted by Puffin books, who were looking for similar input and feedback to ensure that the representation of vitiligo in their upcoming book ‘We’re Going to Find a Monster!’ felt as authentic and relatable as possible.

Supporting the book’s development

Our wonderful Parent Support Network again volunteered to be testers of this new book – with the help of their incredible and enthusiastic children! The network read through drafts and helped flag any feedback or concerns they had with the way vitiligo was portrayed in the book. They also gave general feedback on the book and how their children felt whilst reading and seeing the illustrations of a hero with vitiligo.

One PSN volunteer noted:

My kids enjoyed it, we loved that it’s not specifically about vitiligo. I personally would love to see more stories with characters having vitiligo. Having this opportunity to review and help shape books that my children will enjoy is wonderful.

Helping to support our cause

Following the feedback on the story and illustrations Penguin books were really keen to help raise awareness of vitiligo and to support our work. This resulted not only in a mention of our Society and information on vitiligo in the book’s cover, but also in the publishers making a small donation to our Society to help support our work.

The publishers commented:

We hope you and all the readers enjoy the book, and that it feels refreshing and positive to have a character with vitiligo unselfconsciously front and centre in a fun picture book. 

Creating awareness and understanding

Books like this are so important in helping children feel represented in literature and grow up feeling confident and proud of their visible difference. It also helps introduce their peers and other parents to vitiligo in a positive way, creating an opportunity for more people to become aware of the condition.

Since the book’s launch we have had a number of parents reach out to us looking for support. It’s been wonderful to be able to signpost them to our Parent Support Network and offer a supportive community to people who were feeling anxious or concerned for their child.

You can purchase ‘We’re Going to Find a Monster!’ by Malorie Blackman from Amazon, and most UK bookstores.

New vitiligo clothing range helps our community create awareness and feel proud of their skin

In August 2021 our VitLife editor Natalie shared the news of our online shop launch with our community, 

The Vitiligo Society are delighted to announce the launch of their new online shop selling a range of branded merchandise for those with vitiligo.

The shop, which has been a key focus since January this year, has been one of our critical objectives for the Society and forms part of our strategy to raise awareness and represent the global community.

The range, which is personally and exclusively branded, is the first of its type for the Society. Each item was carefully selected and crafted with the community in mind as we wanted everyone with vitiligo to feel empowered, represented and proud of who they are.

Read the full article HERE.

Our impact so far

Since it’s launch 3 months ago we have been really delighted by the support our shop has received, generating over £1,100 in sales already. 

The feedback on the quality of the products has been extremely positive too, as we wanted to ensure that our suppliers were responsibly sourced but also that the items received were comfortable and long-lasting.

Why not get creative and join the team?

The shop is completely run by volunteers, and whilst we’re off to a great start there is more work to be done!

Over the next few months we’ll be looking at how we can introduce new designs and products to our range and we would love for our community to become more involved in this. Please get in touch with us if you have any experience in design, or if you would like to be a part of the initiative. Email shop@vitiligosociety.org.uk for more information.