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Is there a link between Vitiligo and itchiness? To find out, we asked Dr Anthony Bewley a few questions…

Over the past few months, we have had a few of our members ask about the link between itchiness and vitiligo. Although little research has been conducted on the exact relationship between the two, the symptom is far from uncommon and up to almost a third of patients have experienced some form of itchiness. We wanted to better understand what itchy skin could mean for someone with vitiligo and have therefore asked Dr Anthony Bewley, a consultant dermatologist with a special interest in vitiligo, a few questions on the subject. 

Can vitiligo be itchy and is it normal?

While vitiligo is usually perceived as asymptomatic (1), studies find itchiness a not uncommon symptom, with it being reported by 10-29% of vitiligo patients, depending on the subtype (2,3). Itchiness in vitiligo often worsens the daily quality of life of patients, with both daily and night disturbances. This, in conjunction with social stigma surrounding vitiligo, may result in significant psychological distress of the patients (4). 

Can a specific vitiligo stop being itchy; does the itch mean anything?

The itch in vitiligo can disappear spontaneously; this can sometimes mean that the vitiligo has become less active. It is difficult to establish a clear correlation between the episodes of itchiness and progression of vitiligo, however, it has been proposed that itchiness may indicate that vitiligo is active, especially regarding patients with Koebner phenomenon type IIB (5). Koebner phenomenon is defined as an onset of vitiligo lesions at an injured, previously unaffected area of the skin, typically due to a cutaneous injury (6).

Is there anything that might make vitiligo itchy or worse the itch?

Itchiness in vitiligo is commonly aggravated by dry skin, hot environment and, more rarely, sunlight. Altering the skin surface lipids, pH and cytokine levels could influence the sensation of the itch (3). Skin lipids are released by the epidermis, the outermost skin layer, and act as a hydrophobic barrier that prevents water and electrolyte movement, as well as microorganism invasion (7). Naturally acidic skin pH helps with these functions (8). Skin pH and the surface lipids can be altered by various skin care products, for example harsh hand soaps that wash away the lipids leaving the skin dry and irritable. Cytokines are molecules that mediate the immune response, and their imbalance is thought to be a factor in vitiligo pathogenesis due to its autoimmune nature (9). Cytokine levels are influenced by various allergens, as well as some immunosuppressive drugs (10). As vitiligo is an autoimmune disorder, the patients are also at higher risk of developing allergies than healthy individuals, hence their cytokine levels rise more often, which in turn may trigger itch. The symptom can be also worsened by stress, sleeplessness, and irritant dermatitis (3).

Is there anything to treat the itchiness?

The most effective treatment for itchiness is topical corticosteroids. Other medications include oral antihistamines and anti-inflammatories (topical calcineurin inhibitors). Emollients in topical medications may help with alleviating the itch. UV light treatment can also prove effective. Home remedies such as cold showers can help with itchiness, however, cold environment has shown to both alleviate (more cases) and aggravate the symptom, depending on the individual (3). In certain instances, vitiligo has been known to resolve spontaneously on its own, hence removing the symptom altogether. 

We’d like to thank medical student Kasia Stefańska, for her help in putting this feature together.

References

Yaghoobi R, Omidian M, Bagherani N. Vitiligo: a review of the published work. J Dermatol. 2011 May;38(5):419-31. doi: 10.1111/j.1346-8138.2010.01139.x. PMID: 21667529.Vachiramon V, Onprasert W, Harnchoowong S, Chanprapaph K. Prevalence and Clinical Characteristics of Itch in Vitiligo and Its Clinical Significance. Biomed Res Int. 2017;2017:5617838. doi: 10.1155/2017/5617838. Epub 2017 Jul 30. PMID: 28828385; PMCID: PMC5554571.LEVAI M. The relationship of pruritus and local skin conditions to the development of vitiligo. AMA Arch Derm. 1958 Sep;78(3):372-7. doi: 10.1001/archderm.1958.01560090088018. PMID: 13570695.Lotti T, D’Erme AM. Vitiligo as a systemic disease. Clinics in dermatology. 2014 May 1;32(3):430-4van Geel N, Speeckaert R, De Wolf J, Bracke S, Chevolet I, Brochez L, Lambert J. Clinical significance of Koebner phenomenon in vitiligo. Br J Dermatol. 2012 Nov;167(5):1017-24. doi: 10.1111/j.1365-2133.2012.11158.x. Epub 2012 Sep 5. PMID: 22950415.Goh BK, Pandya AG. Presentations, Signs of Activity, and Differential Diagnosis of Vitiligo. Dermatol Clin. 2017 Apr;35(2):135-144. doi: 10.1016/j.det.2016.11.004. PMID: 28317523.Pappas A. Epidermal surface lipids. Dermatoendocrinol. 2009 Mar;1(2):72-6. doi: 10.4161/derm.1.2.7811. PMID: 20224687; PMCID: PMC2835894.Blaak J, Staib P. The Relation of pH and Skin Cleansing. Curr Probl Dermatol. 2018;54:132-142. doi: 10.1159/000489527. Epub 2018 Aug 21. PMID: 30130782.Singh M, Kotnis A, Jadeja SD, Mondal A, Mansuri MS, Begum R. Cytokines: the yin and yang of vitiligo pathogenesis. Expert Rev Clin Immunol. 2019 Feb;15(2):177-188. doi: 10.1080/1744666X.2019.1550358. Epub 2018 Nov 30. PMID: 30462555.Ter Horst R, Jaeger M, Smeekens SP, Oosting M, Swertz MA, Li Y, Kumar V, Diavatopoulos DA, Jansen AFM, Lemmers H, Toenhake-Dijkstra H, van Herwaarden AE, Janssen M, van der Molen RG, Joosten I, Sweep FCGJ, Smit JW, Netea-Maier RT, Koenders MMJF, Xavier RJ, van der Meer JWM, Dinarello CA, Pavelka N, Wijmenga C, Notebaart RA, Joosten LAB, Netea MG. Host and Environmental Factors Influencing Individual Human Cytokine Responses. Cell. 2016 Nov 3;167(4):1111-1124.e13. doi: 10.1016/j.cell.2016.10.018. PMID: 27814508; PMCID: PMC5787854.

Male Depression: How to Spot and Support those with Mental Health Concerns

Vitiligo can have a significant impact on a person’s self esteem. In fact, studies suggest a person’s self confidence can be severely impacted because of the visible nature of the condition. This, over time, can lead to low self esteem, anxiety, depression and other mental health problems. 

For men, these issues can be even more pronounced, not only because men are expected and more likely to hide their emotions but because body confidence issues are not as openly discussed as they are for women, yet studies have revealed men experience the same concerns around trying to achieve the ‘perfect body’ as women do. Mainstream media, social media and peer pressure are the most common reasons why such pressures exist. 

But how do mental health issues present themselves in men?

Vitiligo and self-esteem

Any visual difference can make us feel self-conscious and anxious in certain situations because it’s something that separates us from others and takes us away from what society believes is the ‘norm’. Often, it can make us feel as though we are on a emotional rollercoaster because of the stress and anxiety a visual difference such as vitiligo can place upon us, which can often lead to an individual experiencing a range of social and emotional repercussions. 

Everyone responds differently to vitiligo; it’s a very individual journey for all of us. For some men, vitiligo can have a positive effect because it’s something that can make us feel unique and special. But others may not feel the same way, and instead can feel angry, lonely and/or depressed. For men in particular, the discussions around body image and appearance are far less prominent, making it harder for men to vocalise how they feel and the issues they’re facing on days when they don’t feel as confident. Coping with these feelings every day can be a challenge and it can take its toll on a person’s mental health and wellbeing. 

Depression in men

Statistics show that men are typically less likely to reach out for support or seek help for mental health issues including depression, because of the notion that they are supposed to be tough and self-reliant. It can be harder for men to acknowledge when they need help, particularly where emotions are concerned because for many years they were encouraged to hide their feelings because it was the ‘manly’ thing to do. It can often mean that men remain undiagnosed because of these traditional views upheld about men. However, over recent years things have slowly started to change and men are being encouraged to express how they feel and seek support from organisations that specialise in male depression and anxiety.

Spotting the signs

The side effects of mental health issues for men can vary depending on the individual, but there are some common signs that you may notice, either in yourself or a male you might suspect could be struggling: 

Anger or aggressive behaviourIrritability and frustrationIndecisivenessIntense agitationFeelings of worthlessnessLoss of interest in activities they once enjoyedWithdrawing and isolating themselvesAbusing alcohol or drugsSignificant weight changes or changes to their appearance

Often, someone with mental health concerns will experience several of the common symptoms of depression or anxiety but they may not always notice it in themselves. This could be because they are in denial and don’t want to admit to being depressed or are unsure of what the symptoms are and so choose to ignore it and carry on.  

While a difficult conversation to have, it’s important that men struggling with their mental health feel supported and cared for, and that often starts with trust in those they can talk to which can help them to see the reality of their situation. Providing a safe space where they can talk and be open is vital to someone feeling supported.

How men can manage depression

Depression can be a very hard subject to speak about and it requires sensitivity and care. But it’s a necessary step in tackling the problem as it might just be the conversation that helps someone you know, acknowledge how they feel and what’s causing it which can lead to them seeking professional help.

Talking to a friend, relative or a professional about your feelings can be helpful in getting to the root of what’s causing your mental health concerns. When you’re dealing with self-esteem and body confidence issues it can be easy to feel consumed by your emotions. 

Talking to someone who is non-judgemental can help you to broaden your mindset and help you to see things from a different perspective. Exercise can also help, not only in improving your mental health through the release of endorphins but also by boosting your confidence and how you perceive your body. It also helps with encouraging you to form a routine.

In some cases, professional help may be more beneficial, however making an appointment with your GP to discuss how you are feeling, can be hard. They’ll be able to advise on what type of treatment might work for you as every situation is different to others. Some men may benefit from psychological support, such as talking therapies and CBT which has proved to be effective for those with vitiligo. Others may benefit from antidepressants or a combination of the two. Talking to a medical professional will help you determine the best route for you and your situation. 

Final thoughts

From engaging in activities you enjoy, to talking about how you feel with a professional or a friend and exercising and eating well to maintain your body confidence, there are a number of different ways you can manage your feelings, whilst attempting to change your outlook from negative to positive. Reaching out to vitiligo support groups to speak with others who have the condition is incredibly useful, as talking to others who are on a similar journey can ease the emotional impact of vitiligo.

It’s not uncommon for those diagnosed with vitiligo to feel ashamed, worried, or depressed about how they look or how others will perceive them, but there is plenty of support for people of all ages and backgrounds to help with living a happy and healthy life with vitiligo. 

“My aim is for our children to see themselves celebrated, including children with vitiligo”

We are huge fans of the diverse characters you have created for children. What inspired you to create this range?

Thank you! The idea started with me trying to find greeting cards for my children when they were much younger. Black and brown children were rarely depicted, my daughter wasn’t really into princesses, and my son was not keen on football. I used to buy cards that featured cartoon characters, illustrated animals or just elaborately decorated numbers to avoid buying cards portraying children who did not look like them or represent their interests.

I have a background in Graphic Design and can illustrate, so I decided to create the cards I wanted to see with characters that looked like my children and their friends. I wanted my children to see themselves represented and celebrated.

Your illustrations are incredible and bring together a diverse set of characters including two with vitiligo. What inspired you to create characters with vitiligo?

I recently extended my range and now have six characters living with vitiligo!

When I started, I originally designed four children in two shades of brown. I then thought about extending my character range to include children with darker and lighter brown skin than the original four – as black and brown people have a variety of skin shades broadly depending on the amount of melanin in their skin. But then I thought, what about people who don’t have any melanin? Or people whose melanin isn’t evenly distributed? I’d not seen any ‘fun’ cards featuring children living with albinism or vitiligo, and the whole point of me creating my cards was for Black and brown children to see themselves, so I decided to be as inclusive as possible across the spectrum.

Having developed my characters with vitiligo, I wanted to make sure that I used the correct language when describing the condition. I don’t have any personal experience with vitiligo, but had come across the Vitiligo Society during my research of the condition, and there was so much helpful information on their website that I decided to reach out to them for guidance. I contacted them via their website and their Charity Director Abbie Hurrell got back to me, and we’ve been in contact ever since!

Two of my characters are actually named after real life people. I posted the illustrations on Instagram and requested that anyone interested, contact me to have a character named after them. Nikayah is @his_workofart and Adalynn is @adalynnmay_hiphiphooray – they are such lovely young ladies.

Tell us a little bit more about the range. What does it include?

I now have eighteen characters (with two more in development) in nine different skin tones, including six characters living with vitiligo and two characters living with albinism. All the characters have a ‘profile’ on my website and are available in four different settings: affirmations, artist, astronaut or starburst. The two characters I’m currently developing are going to be wheelchair users, so I’m in the process of taking advice so that I get the details right.

As well as greeting cards, my product range includes notebooks, bookmarks and posters. I’ve also recently added t-shirts and bags. Since September I’ve been donating 10% of the sale price of my products featuring the six characters with vitiligo, to the Vitiligo Society.

You have been volunteering with the Society and have crated some school resources for parents to share. What was it like putting these together?

It has been a great experience. There are five of us in our group, we meet once a month remotely for about an hour and collectively decide what should be included and how. Sounds very serious, and it is important work, but there is always lots of laughter!

Abbie Hurrell chairs the meeting and keeps us on track with the remit of the pack from the charity perspective. There are parents in the group who are able to clearly specify what would have been useful for them at the outset of their children’s vitiligo journey, especially when dealing with school life. There is also a teacher in the group who can give us a wider understanding of how the pack would realistically be used in school, and I bring my Graphic Design skills!

What message (or messages) do these resources get across?

The resource pack will initially be aimed at primary school children and will explain what vitiligo is and how to talk about it. It will also include profiles on children living with vitiligo and a list of vitiligo story books children could read. The whole project is to educate children (and adults) and dispel myths about the condition, which will hopefully lead to the children living with vitiligo within that school community having a more positive experience.

Where can people find you? Do you have a website/social media?

www.sylviaprince.com  is my website address, I’m on Instagram and Facebook @sylviaprincedesigns and twitter @sprincedesigns

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-fact 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 cause 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 encourage 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.