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UV Light Treatment in relation to Skin Cancer

One of the common questions that is often asked by those considering UV Light Treatment is whether it can lead to skin cancer. Given the concern, we spoke to Dr Jonathan Batchelor, a Consultant Dermatologist at The Centre of Evidence Based Dermatology, for some guidance around what UV Light Treatment involves and the outcome of studies in relation to this type of treatment.

What are the risks of skin cancer with UV light treatment and is this treatment suitable for children? What should I be considering when deciding if this treatment is right for my child?

Ultraviolet (UV) light treatment is usually given for Vitiligo which has not responded to topical treatment such as topical corticosteroids, or topical calcineurin inhibitors (e.g. tacrolimus). It is also given when the vitiligo affects larger areas of skin and topical treatment becomes impractical. In the UK, by far the commonest form of UV light treatment given is narrowband UVB (NB-UVB), although some patients are treated with psoralen plus UVA (PUVA). NB-UVB tends to be used more often for various reasons, including the fact that it is more practical (there is no need for the patient to take psoralen tablets or to soak in water containing psoralen before going into the UV light cabin) but most importantly because the risk of skin cancer after NB-UVB is significantly lower than with PUVA.

There have been some very well-conducted follow-up (cohort) studies of people receiving NB-UVB, which assess the long-term risk of skin cancer in people who have received course of NB-UVB.

Probably one of the best-known studies was done by Hearn and colleagues, published in the British Journal of Dermatology1. This study found no significant association between NB-UVB treatment and the commonest forms of skin cancer (Basal Cell Carcinoma, Squamous Cell Carcinoma and melanoma). There was a small increase in BCCs amongst those who had also been treated with PUVA.  However, the authors of the study suggested that the results should be treatment with some caution, as the cohort contained relatively few patients who had a high treatment number and because the slow evolution of skin cancers may result in a delayed peak in the number being diagnosed many years after UV treatment.

A more recent and even larger study conducted in Korea by Bae and colleagues2 looked specifically at patients with vitiligo who had received NB-UVB treatment, including some who had received more than 500 treatments throughout their lifetime. The study did not show any increase in skin cancer risk for these patients. It could be argued that this study was too short-term to look at the very long term risk of skin cancer in people who have received NB-UVB treatment, but results are certainly very reassuring for anyone considering this treatment.

If anyone is considering UV treatment for their child, I would certainly recommend that the treatment should be with NB-UVB and not with PUVA. Although there are no studies that look at the very long-term risk of skin cancer in people who have received NB-UVB treatment (including those who have received it in childhood), I think that the data from these two studies are very reassuring, and it is very unlikely that the treatment leads to a significant increase in skin cancer risk, even in those who receive the treatment in childhood.

Dr Jonathan Batchelor, BMedSci, BM BS FRCP.

References

1.    Hearn RMR, Kerr AC, Rahim KF et al. Incidence of skin cancers in 3867 patients treated with narrow-band ultraviolet B phototherapy. Br J Dermatol 2008 Sep;159(4):931-5.

1.    Bae JM, Ju HJ, Lee RW et al. Evaluation for Skin Cancer and Precancer in Patients With Vitiligo Treated With Long-term Narrowband UV-B Phototherapy. JAMA Dermatol. 2020 May 1;156(5):529-537

   

New Children’s Book ‘Ready For An Adventure’ Features A Character With Vitiligo

One of the best ways that children can learn and understand the way of the world is through storytelling. Up until recently, children’s stories very rarely featured characters with different skin tones meaning there was very limited representation and children of colour or those with indifferences, weren’t always able to relate to the stories they were reading. However, over recent years, we have seen a number of talented children’s authors and illustrators entering the world of book writing with a desire to represent children from all diverse backgrounds.

One of the latest children’s books to emerge is Ready for an Adventure which follows the lives of two sisters who go on an adventure whilst being at home, and aside from the colourful illustrations and the story itself, one of the highlights is that one of the sisters has vitiligo.

We are always excited to see stories of this type and so we reached out to author Abbi-Jean Reid, illustrator Bhumika Jangid and the founder of Parakeet Books to hear about how this creative story came together….

Abbi-Jean; Congratulations on writing your first book ‘Ready for an Adventure’. How does it feel finally seeing it come together?

Thank you so much! It’s been amazing to see it all come together and actually look like a real-life book. Bhumika’s illustrations are incredible, more than I could have ever asked for and she’s really brought the story and the character’s imagination to life.

Where did the idea for the book come from?

I really wanted to write about something that represented me, and would represent lots of children from different, lower socio-economic backgrounds. Not all children have the opportunity to go to the zoo, or the museum etc, but I still remember having amazing times without doing those things. Me and my sister always managed to have fun on a Saturday at home, so I wanted to write about that and show children that it is possible to have fun at home whatever that looks like.

What inspired you to write a book that included a character with vitiligo?

Parakeet Books (publisher) is all about representing diverse characters who we don’t often see on book covers and in children’s stories, and so when Judy (one of the founders) mentioned creating a character with vitiligo I immediately wanted to, as I have vitiligo myself. When I was younger it was far more prominent and the other children thought it was strange, but if there had been characters with vitiligo in books that we all saw, many of those kids would have realised it’s not strange at all.

Tell us about Gabby who has vitiligo. What is she like as a character?

Gabby is very energetic and bubbly. She is always up for an adventure and is 100% confident that she can save the day (and she can). What we love about Gabby is that her having vitiligo isn’t a topic in the story and we were really keen to make sure it wasn’t. It is mentioned at the start of the story that she has the condition, but the story itself is about the adventure they go on whilst showing that her skin doesn’t impact or make a difference to her life at all.

Author, Abbi-Jean Reid

What do you hope children will learn from reading Ready for an Adventure?

There is so much fun to be had if you can tap into your imagination, and that all sorts of families exist. I also want them to see that children as individuals are all amazing in their own unique way.

What’s next for you in the world of book writing?

I’m very lucky to be working in publishing and so am surrounded by so many incredible books. It couldn’t get any better right? And if the opportunity to write for an amazing publisher like Parakeet Books arises again, I’d definitely grab it with both hands.

You can follow Abbi-Jean on the following social media handles:

Instagram @abbi.jean.reid / Twitter: @abbijeanr

Bhumika, as the illustrator what was it like creating Gabby, the sister with vitiligo?

When I created Gabby, I knew that I wanted her to look as authentic as possible with vitiligo. As a character, she is a cheerful, carefree and fun-loving girl and that’s what I wanted to portray her as, the same as molly, the other character in the book. Whilst there is something different about Gabby in terms of her skin, I was focused on creating a character where her skin wasn’t the centre of who she was. She is just Gabby.

The illustrations throughout are incredible! So colourful and imaginary! What was is it like to create?

Thank you! The story itself features so many themes such as adventure, exploration and kids dressing up and imagining themselves as different characters. There are so many different settings portrayed in one day that I wanted to use bright colours that fuelled the imagination and reflected the different places they explored. I had so much fun creating them.

How did you go about understanding how to portray vitiligo so that Gabby looked authentic?

I wanted Gabby’s skin to look as authentic as possible and so to do that, I done some research and looked at other images as references. This allowed me to better understand the condition, and not just for creating the character but for my own understanding as well. I wanted to portray vitiligo correctly. From what I discovered, I understood that vitiligo can be difficult to manage because it is so visible, but ultimately it doesn’t define who you are…. it’s what’s on the inside that does.

What’s next for you in the world of illustrating?

I am at the start of my illustrating career and there is so much to learn about children’s artwork. I’m so excited about learning of the different drawing styles and brushwork techniques so I can continue to be creative with what I create in the future. I’m very happy with where I am now and completely appreciate all the love I’m getting from Ready for an Adventure. I’m so glad I was part of it.

Parakeet Books, the publisher of Ready for an Adventure are a small independent publishers who are passionate about diversity and inclusivity with strong messaging around using representation to empower. We spoke to them and asked why they felt this was important;

“Our ethos is to represent the infinite variety of people and characters as much as we can. Gabby, Molly and their dads are just the tip of the iceberg. We truly believe children (and adults!) should be able to see themselves within the pages of a book. Not only that we should be able to learn from stories about other kinds of people, other kinds of families – without it feeling didactic.

We’re so happy to have Abbi-Jean and Bhumika on board with us at Parakeet Books. Abbi’s approach is fresh and daring and Bhumika’s artwork always brings a smile to my face.”

Sheju Adiyatiparambil-John, Founder of Parakeet Books.

Parakeet Books are currently running a Kickstarter to help with the funding of the book. If you would like to support and donate, please click on the link below:

https://www.kickstarter.com/projects/parakeet/ready-for-an-adventure-a-diverse-and-magical-story

BLACK HISTORY MONTH AND THE IMPORTANCE OF REPRESENTATION

Every year in October the UK celebrates Black History Month; an important time that recognises and acknowledges the achievements and contribution black people have made, both past and present. 

This year, Black History Month UK, launched ‘Proud to Be’, a month long campaign inspired by the Black Lives Matters movement in 2020 as a way of encouraging black people, including public figures, to share their heritage and culture ‘in their own way’ and ‘in their own words’. 

As a mixed race woman with vitiligo, I didn’t want this month to pass without acknowledging Black History Month and sharing my personal connection to the Caribbean, a country I love and my experience with vitiligo as someone of mixed race heritage. So here goes….

My grandparents came to the UK from the Caribbean in the 1950’s. My Granddad (from Kingston, Jamaica) arrived first, followed by my Grandmother (from Westmoreland, Jamaica), two years later. Along with thousands of other Caribbean’s at that time, they were encouraged to come to the UK to help rebuild the weakened British economy after the end of World War Two which had lead to a huge shortage in workers. The very first boat arrived into Tilbury Docks bringing Caribbean’s from Jamaica, Trinidad and Tobago and other surrounding islands, on the 22 June 1948 and was known as the Empire Windrush. There were 492 passengers on-board including children. On arrival and once settled, the most common sectors in which they worked were manufacturing, public transport and the NHS. 

My Grandparents settled in East London. My Dad was already born, but had been left behind in Jamaica with his grandparents, which was common back then. When he was old enough he would be called for by his parents so that he could join them in the UK, which he did. My Dad arrived alone from Jamaica into Britain in the 1960’s and his most poignant memory when he stepped off the plane was just how cold it was! The tropical climate of the Caribbean, the incredible food, the family he had left behind and the Caribbean way of life, was very much a distant memory for him and it took him a while to fully adjust to a completely different environment. He was just 13 years old. 

I won’t go into how my parents met, but obviously they did and a few years later they had me! Their first child. I was born in the early 80’s in East London. My Dad, as you’ve probably guessed is black and my Mum is white, making me mixed race with a caramel skin tone…. which didn’t stay caramel for very long because I developed vitiligo.  

I developed vitiligo when I was 3 years old; an age so young that I didn’t understand what it was nor could comprehend how it might affect me in later life. I’ll always talk fondly of my childhood because vitiligo didn’t really cause me any problems as I didn’t realise I was different. I was raised in a very multicultural community amongst all races, so it meant everyone was aware that I had patchy skin, but they didn’t treat me any differently because of it. They just knew me as Natalie. 

Vitiligo became a problem for me in my teen years and because it was a problem for me, I assumed it was a problem for everyone else. It also coincided with me moving to Essex, which at the time was predominantly white, so it meant, not only did I stand out because I had vitiligo, but I stood out because I was mixed race. Being mixed race meant that my white patches were instantly noticeable and given the vitiligo was all over my face, arms, hands and legs, it meant that I couldn’t escape what it looked like.  I remember it being difficult to hide, especially during PE lessons where there was no option but to wear the school uniform skirt – exposing my skin more and adding to my discomfort.  I spent the majority of my teenage years feeling insecure, paranoid, unattractive and as though I was constantly being judged because of how I looked. 

Montego Bay, Jamaica

Having vitiligo is a different experience for everyone and whilst we may go through similar challenges and feel a sense of ‘togetherness’ when we learn the stories of others with the condition, but ultimately, vitiligo can be a very isolating experience. Vitiligo is noticeably more prominent on darker skin which means it can potentially be more distressing because of the stark contrast of the white patches against darker skin and whilst I would never disregard anyone’s feelings about how they feel about their skin, there have been moments when I’ve wished I was fairer so it would feel less noticeable to me. I recall moments when I bumped into another patient with vitiligo during a hospital visit who was white and I could feel myself leaning in trying to see their patches, whilst wishing I was white so that my patches blended in like theirs seemed to. For some reason I felt like that would make my life a little bit easier. 

Having a darker skin tone meant I was met with assuming and offensive questions and remarks such as asking whether I’d been burnt in a fire or people automatically having sympathy for me because ‘it must be so hard to have skin like mine’. It was damaging moments like that, that made me feel my skin wasn’t beautiful, or desirable. 

The memories I share are from many years ago and thankfully since those times when vitiligo was a condition many of us were taught to hide and disguise from others, we have come along way….a very long way. As you have seen, a lot of work is being done to raise awareness, educate and most importantly, show others that people like us are deserving of being seen as equal to others in society and the media. Children are being taught about visible differences in schools, authors are writing more inclusive books which feature characters with vitiligo and most notably, toy manufacturer Mattel have released two Barbie Dolls, the first of their  type, with vitiligo skin. For me, this feels like just the start. 

Someone who has contributed to raising awareness of vitiligo through her work as an illustrator is Sylvia Prince, a mother of two from London. As part of this feature, I wanted to understand what Black History Month meant to Sylvia and why she felt it was important to represent vitiligo in the work she does:

“Representation is important. Whether you see people who look like you on the TV programmes, in books, or in positions of leadership in your place of work, it can have an impact on your self esteem. When you see yourself represented amongst society it makes you feel included and more importantly, feel valued.

When I attended school, I was taught – by deliberate omission – that people who looked like me had no history or contribution other than a story of misery. This narrative could have affected how I viewed myself, but just as importantly, how others viewed me. Luckily, I had a strong community around me, and like the vast majority of black children, I received an ‘alternative’ education at home. An education that introduced me to all of the amazing black activists, leaders, inventors, scientists, artists… you name it, there’s a black person who did it.

Black History Month aims to educate the wider society about the achievements of black people. But for me, this inclusive history should be taught all year round, not just for one month of the year.

My personal contribution to ensuring more children feel seen and valued was triggered by becoming a mother. I recall a time when simple things like buying birthday cards for my children felt like a struggle because there were no images that represented who they are. Black children celebrate birthdays, so why aren’t there cards to reflect that?

After years of buying cards with cartoon characters or illustrated animals, I decided to create cards depicting characters who looked like my children and their friends. I wanted my cards to be as inclusive as possible, including a variety of shades of black and brown, and so made a conscious decision to have children who lived with vitiligo and albinism as part of my collection. I now have 18 characters and am working on others with differing physical abilities.

I want our children to feel seen, valued and ultimately, I want them to see themselves celebrated.”

Please do get in contact with us if you would like to share your story as part of Black History Month and beyond, together we can raise awareness of vitiligo and the impact it has on people’s lives.

News

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.

Vitiligo bear goes into production!

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 have been designed and are ready to go into production! 

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 have been finalised the bears will go into production and be made available to purchase via our online shop in the new year.

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

Society begins new project to develop schools resources

For the past few months we have been working on an exciting new project, following feedback from one of our first Parent Support Network meetings.

Why schools resources are important to us:

Our Society is committed to:

Delivering up to date accurate information on vitiligoDeveloping our support services, including our growing Parent Support NetworkBuilding a strong voice for our Society and the vitiligo community, including developing a network of ambassadors and speakers and distributing of educational resources Our new project team and their aims:

A new project group has been bought together to help develop schools resources with the additional aims of enabling us to:

Strengthen the support network around young people, by creating awareness about vitiligo and minimising the psychosocial effects of living with a visible differenceProvide early awareness and intervention for young people who may not be aware that they have the condition – something that it crucial to more effective treatment of the conditionSupport in the development of coping mechanisms from a young age, building confidence in children to talk about their differences

The project group is made of a few incredible volunteers who give their time to bring this work together and develop resources that our whole community can benefit from. We want to say a huge thank you to Sylvia, Akila and Simone for their continued hard work and support.

Here is a sneak peak from what we are currently working on:

Our vision for the resource pack:

We anticipate that the final resource pack will include:

A presentation to be used in schoolsA signposting document to other support servicesA template letter for parents to request that teachers share with other parents, educating about vitiligo and what it meansA template letter for parents to share with teachers educating about vitiligo and what it means to their child. Taking into account any additional considerations or support their child might need.

We can’t wait to share this pack with our community once it’s finalised!

How to get involved in this work:

If you would like to get involved in, or make a donation toward, this work then please email us: hello@vitiligosociety.org.uk

Announcing a new Chairperson for The Vitiligo Society

To all Society members, volunteers and supporters,

I am writing to you today to share some news of changes within the leadership of The Vitiligo Society.

It is with a heavy heart that I notify you that I stood down as Society Chairperson and Trustee at our most recent charity Board meeting. I have dedicated the last 5 years of my life to executing on a vision for the Society that fully realises its potential, with a razor sharp focus on positively impacting the lives of so many living with vitiligo, and their families. I am extremely proud of the radical transformation that has been achieved, and so thankful to the Trustees, staff and volunteers that worked tirelessly to make the vision a reality. As a small charity, the changes we enacted meant that despite the turmoil of the last 2 years caused by the pandemic, we have not only survived, but begun to thrive.

My decision to stand down was not easy, but I feel now is the right time to move on to pastures new. The foundations have been laid, and we continue to increase and diversify our income streams so we can invest in new vitiligo projects, programmes and support initiatives. We have had a material increase in volunteers, and a Board of Trustees of highly skilled and empathetic individuals that continues to grow.

As for my successor, I’m truly delighted to announce that John Dunster was unanimously voted in by the Board as the new Chairperson of The Vitiligo Society. John is a passionate advocate for making life better for those living with vitiligo, and I couldn’t be happier to be handing over the reins to him. John has had vitiligo for over 15 years and became a Trustee in June 2019. He has brought a wealth of experience from the corporate world to our charity and played a key role in the modernisation of the Society since he came onboard. You can reach out to him at john.dunster@vitiligosociety.org. John assumes the Chair role immediately and you’ll be hearing more from him very soon.

I also leave you in the extraordinarily capable hands of our growing board of volunteer Trustees and Charity Director, Abbie Hurrell. Abbie has been instrumental in realising the aforementioned vision for the Society and driving our mission forward. She has galvanised the Society since joining in January of this year, and I am so excited to watch the charity go from strength to strength as I step back from my leadership role. You can get in touch with Abbie directly at abigail.hurrell@vitiligosociety.org.

I’d like to thank you all for continuing to support the Society, it’s been a pleasure to serve all of our supporters and members. Although no longer Chairperson, I shall remain your peer as a member of the Society and look forward to interacting with you on our online platforms and at future events.


With all my best wishes,

Participants required to test the wording of a clinical questionnaire

POW Translations are working on behalf of RWS Life Sciences, to recruit and interview 5 patients with vitiligo to test the wording of a questionnaire which will subsequently be used as part of clinical trials in the UK.

Who are POW Translations?

POW Translations Inc. is a Canadian translation company that specialises in linguistic validation, clinician recruiting and cognitive debriefing in the life sciences field, for this questionnaire they are working with a UK based consultant.

Who is eligible?

They are seeking 5 patients with Vitiligo (2 patients 12-17 years old + 3 patients 18-75 years old). Under 18s should have the consent and supervision of their parent or carer.

What will the study involve?

Participation will take the form of a telephone interview (approximately 1 hour in length) and any information gathered is limited to feedback as to whether (or not) the questions posed are well understood by the participants.

These questionnaires will subsequently be used as part of clinical trials in the UK. No personal information will be gathered other than basic contact information. Participants will be compensated £75 for their time.

How to get involved:

For further information or to register your interest in participation, please contact glynis.brydon@gmail.com.

Vitiligo Research Foundation share UK results of their Quality of Life study

In June 2021 our friends at the Vitiligo Research Foundation launched their Quality of Life study. This study was designed to help researchers understand the impact of the disease. The idea was to compare the results to a similar study the Foundation ran in 2018. Run on a global scale the Vitiligo Society partnered with the Foundation to deliver the study in the UK.

View the full research results from the Foundation

The study in more detail

Vitiligo affects all ages, sexes and social groups and approximately 1-2% of the world population. It is typically characterised by smooth white patches in the midst or normally pigmented skin, which gradually expand over time. Besides skin manifestation, symptoms such as depression, anxiety and sleep disorders are very common in people affected by such conditions. Although primarily viewed as a benign skin condition, vitiligo has severe socioeconomic effects, which have a substantial impact on many aspects of physical, emotional, and mental well-being.

This was an online survey designed to compare Quality of Life measure of patients with vitiligo in different countries within the same timeframe that could potentially relate to region-specific burden of the disease. Of the Vitiligo Society the study has been useful in understanding the change in impact of vitiligo for UK participants over the last 3 years.

The study ran from the 30th May 2021 – 30th June 2021.

What were some of the key findings? 79% of participants reported feeling self conscious or embarrassed about their skin in the past week64% of participants reported that their skin influenced the clothes they choose to wear30% of participants reported that their skin has been a problem at work or whilst studying29% of participants felt treatment caused problems by making their home messy or taking up time20% of participants felt their skin created problems with their loved ones or friendsGenerally participants in 2021 displayed an improved quality of life compared to participants in 2018, however it’s clear vitiligo still impacted the lives of the majority of participants. How do studies like this help our Society?

The Vitiligo Society can use these results to demonstrate the need for greater awareness of the condition and more effective treatments. Results like this influence our strategy and how we allocate our resources, they also help strengthen our conversations with partners and demonstrate how important the work we do is.

Participants required for Global Vitiligo Foundation study into alternative treatments for vitiligo

The Global Vitiligo Foundation are working on a project to better understand the use of alternative treatment use in people who have vitiligo, and their views on using over-the-counter treatments.

Who are the Global Vitiligo Foundation?

The Global Vitiligo Foundation are a US based organisation set up to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.

Who is eligible?

Participants need to be over the age of 18 and have been diagnosed with vitiligo by a licensed medical professional.

What will the study involve?

The study will involve a 10 minute online survey. You may stop the survey at any time and answers will remain confidential.

This study has been approved by the Institutional Review Board.

How to get involved:

Link to survey: https://www.surveymonkey.com/r/MCZS3LK

If you have any questions, feel free to reach out to Dr. Richard Huggins at rhuggin1@hfhs.org.

Participants required for Cardiff University study into childhood skin conditions

Cardiff University are seeking participants to assist researchers by being interviewed about their experiences of support for the psychosocial issues connected with childhood skin conditions

Who is eligible?

Children aged between 8-11 years of age, diagnosed with a skin condition, and no other chronic health conditions.

Their adult parent(s)/primary caregiver(s) (18 years of age)

Two parents/carers are welcome to participate, although this is entirely flexible and up to the carers to decide which parent/carer (or two) takes part.

What will the study involve?

The study will involve the child and their primary carer(s) participating in a recorded online interview held over Zoom, lasting approximately 1 hour.

Participants will be asked about any support options they have been offered or undergone, what they would like to see change in relation to current psychological support, and what they might find helpful from future interventions.

This study has been granted ethical approval by Cardiff University School of Psychology Research Ethics Committee.

How to get involved:

If you would like more information about the study, or are interested in participating, please email Olivia Hughes hughesoa@cardiff.ac.uk.

New vitiligo Peer Support Group launched

The Vitiligo Society are embarking upon a series of initiatives to provide accessible and active support to its community members. We recognise what a challenging and perhaps lonely journey Vitiligo can be, and how important a space that enables individuals to connect with one another is. 

In order to facilitate this type of ‘space’, we have been exploring the idea of a regular support group, which from time to time, may also include expert talks by professionals. To test how this might work best for our members, we have decided to set up a pilot. This pilot “peer support group” will run over two virtual zoom dates:

Session 1 – 23rd August 2021: An open flow group where individuals will be free to talk about their Vitiligo experiences, and a chance for our community to meet and socialise 

Session 2 – 4th September 2021: – A specialised talk by Nutritionist Kai Rai, who will provide her own insight on nutrition specifically for Vitiligo. There will be some Q & A time afterwards

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 carer. The aim will be to foster a harmonious environment where individuals can meet, be positively supported, and leave feeling more uplifted. A chance to learn, share information, challenges and personal Vitiligo journeys with others.

Hanna Gor, the volunteer behind the new initiative, shared her motivation behind setting up the pilot events:

After going through an emotional and challenging time trying to obtain a diagnosis, it struck me how lonely the whole experience felt. There didn’t seem to be any groups available to turn to. A chance to ask questions, or perhaps attain a few words of encouragement from individuals who understood first-hand, would have helped ease the mental anguish I was feeling.

The idea of a Vitiligo support service started to develop – I could see there was a gap, and felt such a concept could act as a great tool to positively help others on their own journey. I decided to contact The Vitiligo Society and offered to volunteer with this proposal in mind. Together, we evolved the idea into a peer support group, and here we are with the pilot! I really hope this initiative turns out to be one people find useful, as I passionately believe in it!

We will be gathering and reviewing feedback from attendees at the end of the pilot – should it prove successful, the intention will be to set up a more permanent offering in the near future. 

If you feel an initiative like this is valuable – please support us and sign-up to this pilot, or offer to help our small volunteer team on other events. To get involved, or for any other questions, email us at: peersupport@vitiligosociety.org.uk 

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