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Vitiligo Experts Answer FAQs About the Condition in Live Panel

Vitiligo Experts Answer FAQs About the Condition in Live Panel

This fall, leading vitiligo experts gathered for a live panel where they answered frequently asked questions about vitiligo. Moderated by Dr. Amit Panyda, the panel also included Dr. Pearl E. Grimes, Dr. Seemal R. Desai and Dr. John Harris. These leading experts weighed in on topics including the cause of vitiligo, genetics and autoimmune implications, pregnancy, diet, nutrition and treatments.

The live event was co-hosted by MyVitiligoTeam, a social network for those with vitiligo, and the Global Vitiligo Foundation, an organization dedicated to improving the life of those with vitiligo through education, research, clinical care and community support.

Here’s some of what they shared during the event:

What causes vitiligo?

According to the panelists, vitiligo can be caused by one of three things: genetics, autoimmune destruction of melanocytes (skin cells) and oxidative stress.

How does diet impact vitiligo?

While there is not evidence that diet and nutrition can cause vitiligo, panelists stressed that a healthy diet is important when living with any autoimmune disease, including vitiligo. Dr. Pandya recommended that those with vitiligo have five servings of fruits and vegetables a day.

Do hormonal disorders or pregnancy cause vitiligo?

The panelists agreed that they have not seen hormones playing a major role in vitiligo. Dr. Pearl Grimes shared that while some of her patients will experience a spread in vitiligo while pregnant, others will experience repigmentation.  

What’s the likelihood of passing vitiligo to your children if you have it?

The average person has a 1 in 100 chance of getting vitiligo. However, if you have a parent with vitiligo, you have a 6 in 100 chance of getting the condition. In other words, there is a 94% chance that if you have vitiligo, your child will not get vitiligo.

Can you get other autoimmune diseases if you have vitiligo?

Yes, you can. The panelists stressed that if you live with vitiligo, you should be screening for other autoimmune diseases too. In particular, those with vitiligo have a 15% higher chance of developing Hashimotos, or hypothyroidism, the result of an underactive thyroid gland. Regular screenings for this and other autoimmune diseases can allow for early detection and treatment.

How do you find a board-certified dermatologist who is a vitiligo specialist?

There are two recommended ways to find vitiligo specialists. The Global Vitiligo Foundation has a list of vitiligo treatment centers around the world. You can access their directory at https://globalvitiligofoundation.org/find-a-treatment-center/. The University of Massachusetts Vitiligo Clinic and Research Center also has aVitiligo Clinicians World Map available at https://www.umassmed.edu/vitiligo/vitiligo-clinicians-world-map/.

Can meditation help improve vitiligo?

There are interesting studies on mindfulness and controlling stress levels. While there’s no evidence that controlling your stress could stabilize vitiligo, there are anecdotal cases about people changing jobs or moving to a relaxing space and experiencing repigmentation in their skin. Overall, it’s recommended that you reduce stress through therapy, exercise and meditation.

You can watch the full live-stream of the panel at https://www.myvitiligoteam.com/resources/your-vitiligo-questions-answered-live-on-myvitiligoteam.

Disclaimer: The information, including but not limited to, information from presenters, text, graphics, images and other material shared during this event are for informational purposes only. The information is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you have have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you heard during this event.

Meet the former vitiligo blogger leading The Vitiligo Society into a new era

Simon Parker was just nine years old when he found the first white patches on his skin. He didn’t know what it was – and neither did his doctor, when he finally asked more than three years later. At least at first.

“I still remember my doctor rubbing a patch on my hand to see if the white would come off,” said Simon, recalling his initial appointment. Two consultations later – and with the help of a large book on dermatology, the doctor had an answer. “Reading from the book, she said, “Aha, it’s vitiligo! There is no cure, it will probably get worse but don’t worry, it’s not contagious.””

Today, there is a lot more awareness around vitiligo – thankfully both for those who live with the condition and the doctors and dermatologists that diagnose those with it. And some of that awareness has been led by Simon himself – first as a well-known vitiligo blogger and now as the chairperson of the Board of Trustees for The Vitiligo Society.

Growing up with vitiligo, Simon remembers school being a tough time. After being teased about a white patch of hair on the back of his head, Simon started dying the patch every two weeks until his early twenties. At that time, he started losing pigment on his face at a rapid – and almost daily – pace. The significant change sparked a determination to find a treatment that could help reverse and stop the spread of vitiligo.

To date, Simon has tried several treatments including steroids creams, narrowband UVB and supplementation. The most successful treatment, however, was Climatotherapy at the Dead Sea in Jordan. The treatment involves bathing in the Dead Sea – which lowers oxidation in the skin due to the salts and minerals – and sunbathing for extended periods of time – which in Jordan, is 400m below sea level and has a better UVA/UVB ratio for repigmentation. To document his journey with Climatotherapy, Simon started a blog that quickly became the go-to resource on this type of treatment. And the process worked – Simon not only saw repigmentation on his face but notes that the treatment drastically improved his self-image and quality of life.

Throughout his journey with vitiligo, Simon was surprised to experience how much his pigment was connected to his identity. The loss of pigment often came with the loss of confidence, self-esteem and self-love. The inability to show up in the world the way he wanted was hard to accept. Today, following years of treatment and personal work on his mental health and well-being, Simon has reached a new place in his journey with the condition.

“I’ve accepted my vitiligo to a degree and have learned to live with it,” said Simon, who lives in London. “I wouldn’t say that I love the condition like some others have been able to do – which is fantastic – but it’s brought many lovely people and experiences to my life and has deepened my ability to empathise and show compassion to others.”

Today, Simon pours his energy into raising awareness for vitiligo through The Vitiligo Society, a 35-year-old organisation that carries a heritage of supporting those with vitiligo and engaging with the medical industry to further research. After serving on the Board of Trustees for five years, Simon became the Chairperson of The Vitiligo Society at the beginning of 2020.

“As someone who has vitiligo, I care deeply about delivering impactful services to help others living with the condition,” said Simon, who brings his business acumen to the charity.

Having spent his career working in technology and business development for companies like IBM, Accenture, and a number of start-ups, Simon is applying his private-sector skills to The Vitiligo Society to help the charity become a modern digital-first, problem-solving organisation for vitiligo.

“I’m proud of what has been achieved and the progressive forward-thinking organisation we’ve become.”

Results of the Hi-light Vitiligo Trial

It’s been a pleasure to share updates about the HI-light Vitiligo Trial in The VitLife and we’d like to take this opportunity to thank everyone who has supported the trial over the years. We’re delighted to share the much-anticipated results of the trial with you in this latest edition. Further information can also be found on our study website.

Thanks to the HI-LIGHT Vitiligo Trial, we now have a better understanding of the effectiveness, safety and acceptability of topical corticosteroids and home light therapy, and the results are being shared with clinicians responsible for the care of people with vitiligo. 

We have also produced a brief animation about the trial to help people with vitiligo to understand the results.

Why did we do the trial?

Standard vitiligo treatments include steroid creams and narrowband UVB light (NB-UVB). However, there is limited evidence about how well these treatments work. Recently, it has been possible to buy handheld light therapy devices at a reasonable cost. Availability of these devices now means that vitiligo can be treated at home, without the need to attend hospital two or three times a week for long periods of time.

This is why the National Institute for Health (the part of the NHS that does research) funded a trial assessing the use of steroid cream and handheld NB-UVB light devices to treat vitiligo at home. The trial compared how well these treatments work, both alone and in combination, for treating small patches of vitiligo, and whether there were any side effects.

What treatments did we test?

The participants were split into three groups. To make sure participants didn’t know what treatment(s) they were using, all were given a cream and hand-held light emitting device:

Steroid cream only group – this group received a steroid-containing cream and a dummy light (light produced was not NB-UVB light) NB-UVB only – this group received a dummy cream (a cream with no steroid in it) and a NB-UVB light device Combination – this group received a steroid-containing cream and a NB-UVB producing light device

What did the results show?

After 9 months of treatment, we asked participants to judge how noticeable their vitiligo was at a ‘target’ patch (a patch which they’d treated and where they most wanted to see an improvement). We considered the treatment to be a success if the participant said that their patch was ‘a lot less noticeable’ or ‘no longer noticeable’ at the 9-month timepoint. This was measured using the Vitiligo Noticeability Scale, which we had previously developed in collaboration with patients (Figure 1).

Figure 1: Vitiligo Noticeability Scale

The results showed that using both treatments in combination was better than using just steroid cream or NB-UVB on their own (Figure 2). Combination treatment was also likely to achieve a treatment response more quickly.

Figure 2: Graph showing the percentage of trial participants with treatment success at the target patch during the treatment period of the trial.

Patches on the hand and feet were less likely to respond well to treatment than patches on other parts of the body.

Almost two-thirds of people using combination treatment achieved at least partial treatment response by 9 months (27% said their vitiligo was no longer noticeable or a lot less noticeable, and 35% said their vitiligo was slightly less noticeable).

Using steroid cream alone was also a useful treatment for some participants and is likely to remain the first treatment recommended for use (17% using steroid cream alone said their vitiligo was no longer noticeable or a lot less noticeable, and 24% said their vitiligo was slightly less noticeable).

People who used treatment more often were more likely to have a successful treatment response.  The trial also showed that these treatments are safe to use at home for up to 9 months with minimal side effects.

The most commonly reported side-effect of treatment was accidental burning of the skin (like sunburn), and some people reported thinning of the skin. For these people, treatment was stopped until the symptoms improved.

Unfortunately, for many people, the vitiligo returned once treatment was stopped, suggesting that ongoing maintenance treatment might be needed.

What does this mean?

This trial showed that using steroid cream and NB-UVB in combination is likely to be better than steroid cream used alone, although for some people steroid cream alone can be effective and remains a useful treatment. If the treatments are to work as well as possible, they need to be used regularly, and this requires a significant time commitment over many months.

Further research is needed to find the best way of maintaining any improvement in the vitiligo over the long term. With no known cure for vitiligo, and very few treatment options available, combination treatment with steroid cream and handheld NB-UVB is a reasonable treatment option for people with small areas of vitiligo

Hospitals that took part in the HI-LIGHT Vitiligo Trial are being encouraged to use the trial devices to start homebased phototherapy services, but for the moment, home NB-UVB treatment is not offered as normal care in most parts of the UK.

If people with vitiligo wish to purchase their own light therapy device for home treatment, we would recommend asking for advice from a dermatologist prior to use. We have made available the treatment schedules & treatment log and training videos from the trial on our website as helpful resources for clinicians.

Disclaimer:

The HI-Light Vitiligo Trial was funded by the National Institute for Health Research’s Health Technology Assessment Programme (project number 12/24/02) to inform NHS care. The views and opinions expressed herein are those of the HI-Light Vitiligo Trial Management team and do not necessarily reflect those of National Institute for Health Research’s HTA Programme, NIHR, NHS or the Department of Health.

News

Results of the Hi-light Vitiligo Trial

It’s been a pleasure to share updates about the HI-light Vitiligo Trial in The VitLife and we’d like to take this opportunity to thank everyone who has supported the trial over the years. We’re delighted to share the much-anticipated results of the trial with you in this latest edition. Further information can also be found on our study website.

Thanks to the HI-LIGHT Vitiligo Trial, we now have a better understanding of the effectiveness, safety and acceptability of topical corticosteroids and home light therapy, and the results are being shared with clinicians responsible for the care of people with vitiligo. 

We have also produced a brief animation about the trial to help people with vitiligo to understand the results.

Why did we do the trial?

Standard vitiligo treatments include steroid creams and narrowband UVB light (NB-UVB). However, there is limited evidence about how well these treatments work. Recently, it has been possible to buy handheld light therapy devices at a reasonable cost. Availability of these devices now means that vitiligo can be treated at home, without the need to attend hospital two or three times a week for long periods of time.

This is why the National Institute for Health (the part of the NHS that does research) funded a trial assessing the use of steroid cream and handheld NB-UVB light devices to treat vitiligo at home. The trial compared how well these treatments work, both alone and in combination, for treating small patches of vitiligo, and whether there were any side effects.

What treatments did we test?

The participants were split into three groups. To make sure participants didn’t know what treatment(s) they were using, all were given a cream and hand-held light emitting device:

Steroid cream only group – this group received a steroid-containing cream and a dummy light (light produced was not NB-UVB light) NB-UVB only – this group received a dummy cream (a cream with no steroid in it) and a NB-UVB light device Combination – this group received a steroid-containing cream and a NB-UVB producing light device

What did the results show?

After 9 months of treatment, we asked participants to judge how noticeable their vitiligo was at a ‘target’ patch (a patch which they’d treated and where they most wanted to see an improvement). We considered the treatment to be a success if the participant said that their patch was ‘a lot less noticeable’ or ‘no longer noticeable’ at the 9-month timepoint. This was measured using the Vitiligo Noticeability Scale, which we had previously developed in collaboration with patients (Figure 1).

Figure 1: Vitiligo Noticeability Scale

The results showed that using both treatments in combination was better than using just steroid cream or NB-UVB on their own (Figure 2). Combination treatment was also likely to achieve a treatment response more quickly.

Figure 2: Graph showing the percentage of trial participants with treatment success at the target patch during the treatment period of the trial.

Patches on the hand and feet were less likely to respond well to treatment than patches on other parts of the body.

Almost two-thirds of people using combination treatment achieved at least partial treatment response by 9 months (27% said their vitiligo was no longer noticeable or a lot less noticeable, and 35% said their vitiligo was slightly less noticeable).

Using steroid cream alone was also a useful treatment for some participants and is likely to remain the first treatment recommended for use (17% using steroid cream alone said their vitiligo was no longer noticeable or a lot less noticeable, and 24% said their vitiligo was slightly less noticeable).

People who used treatment more often were more likely to have a successful treatment response.  The trial also showed that these treatments are safe to use at home for up to 9 months with minimal side effects.

The most commonly reported side-effect of treatment was accidental burning of the skin (like sunburn), and some people reported thinning of the skin. For these people, treatment was stopped until the symptoms improved.

Unfortunately, for many people, the vitiligo returned once treatment was stopped, suggesting that ongoing maintenance treatment might be needed.

What does this mean?

This trial showed that using steroid cream and NB-UVB in combination is likely to be better than steroid cream used alone, although for some people steroid cream alone can be effective and remains a useful treatment. If the treatments are to work as well as possible, they need to be used regularly, and this requires a significant time commitment over many months.

Further research is needed to find the best way of maintaining any improvement in the vitiligo over the long term. With no known cure for vitiligo, and very few treatment options available, combination treatment with steroid cream and handheld NB-UVB is a reasonable treatment option for people with small areas of vitiligo

Hospitals that took part in the HI-LIGHT Vitiligo Trial are being encouraged to use the trial devices to start homebased phototherapy services, but for the moment, home NB-UVB treatment is not offered as normal care in most parts of the UK.

If people with vitiligo wish to purchase their own light therapy device for home treatment, we would recommend asking for advice from a dermatologist prior to use. We have made available the treatment schedules & treatment log and training videos from the trial on our website as helpful resources for clinicians.

Disclaimer:

The HI-Light Vitiligo Trial was funded by the National Institute for Health Research’s Health Technology Assessment Programme (project number 12/24/02) to inform NHS care. The views and opinions expressed herein are those of the HI-Light Vitiligo Trial Management team and do not necessarily reflect those of National Institute for Health Research’s HTA Programme, NIHR, NHS or the Department of Health.

The Vitiligo Society coronavirus update

It is with regret that my first communication, as the new Chairperson of The Vitiligo Society, is at such a challenging time. But I felt it was important to introduce myself and share some information on coronavirus and the current understanding in relation to vitiligo. We are here to help support our members and the wider vitiligo community.

The coronavirus and vitiligo

We appreciate that, at this current time, many of us are concerned about the coronavirus pandemic and the potential risks to our health. For those with vitiligo, there may be questions over whether there is any additional cause for concern. We felt that it would be helpful to share some advice from two well-respected vitiligo sources:

Firstly, we would recommend reading the full article by Dr John Harris, from the Vitiligo Research Clinic and Research Centre at UMASS medical school, via the link here.

He summarises:

In most cases, you are not at a higher risk of getting COVID-19 if you have vitiligo. If you are taking medicines for vitiligo and are still concerned about how it may affect you, talk to your doctor. And as we tell everybody, please do your part to prevent the spread of the virus during this pandemic, by washing your hands, not gathering in large groups, and meeting with people over the phone or videoconference instead of in person when possible.

For those treating their vitiligo with drugs and medicines that can have potential immunosuppressive side effects, there is more specific information and advice on the website of the British Association of Dermatologists (BAD) at this link.

Their advice includes the following statement on if you are more at risk but please read their full article for further details:

The BAD is aware of the concerns about COVID-19 amongst people who are taking medicines that affect the immune system. The BAD is not aware of any good evidence that these people are at a greater risk of getting COVID-19 or having a more severe form of the illness. This advice may change as we find out more about this new condition, so please check the Gov.UK and NHS websites regularly.

If there are any updates or further research that we feel is relevant and can support you at this difficult time, we will do our best to share this with you all as soon as possible. 

Government advice

The UK Government is now advising that all practise social-distancing, limiting our interactions with others to an absolute minimum, to help limit the spread of COVID-19.  

Importantly they are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.

This group includes those who are:

aged 70 or older (regardless of medical conditions)under 70 with an underlying health condition.are pregnant 

For full details of the current advice, including health conditions this applies too, please see this link. 

The Vitiligo Society

At the beginning of the year, we closed our physical office in London to reduce our operating costs as part of a Digital Transformation. We implemented technology infrastructure that allowed our staff, volunteers and trustees to work and communicate effectively from anywhere in the world. This has meant that we’ve been able to continue operating effectively under the social distancing guidelines. We will continue to work hard throughout this period to ensure you, our members, are supported and that the wider work of the Society continues as best it can.

We are carefully applying all the government advice to ensure safety, health and support for our staff, volunteers and trustees too. 

Rest assured that we are building a contingency plan for the Society to ensure that we can serve those with vitiligo and deliver the best impact we can in spite of the developing economic climate. 

Please do let us know if you have any further queries in relation to this email or our wider work by emailing us at hello@vitiligosociety.org.

I, along with the Board of Trustees, wish you all the best and good health during these testing times. I’m looking forward to having an open and transparent conversation with you all in the coming months about our work, the changes we are making and how we can further positively change the lives of those with vitiligo.

Volunteers needed!

The Vitiligo Society is looking to broaden its experience in a number of areas as part of its modernisation programme. To this end, five new director based roles have been created to sit alongside the current Board of Directors.

What is involved?

These roles are on a volunteer basis and expected to take up a minimum of 4 hours per month. These roles can be located anywhere in the UK, but are expected to be able to travel to London around twice per year. Most board meetings will be done via conference calls. In all cases the roles require a bias towards digital/ web based initiatives. All roles are Director roles, and will form part of the Board of Directors, with full voting rights.

Make a difference

Directors are expected to either have Vitiligo or have a close personal connection with Vitiligo. The Society is at a crucial period of inflection as it looks to become fit for the digital age and there is huge opportunity to make a difference not only in improving how the Society operates but also improving the lives of thousands of people with Vitiligo.

How to apply

Five roles are outlined below. Should you be interested in applying, please send your CV to hello@vitiligosociety.org. This will be followed by a brief telephone conversation with one of the current Directors followed by an invitation to join a Board meeting in an advisory capacity.

The roles in more detail

The roles are described in more detail below.

1. Director – Commercial & Fund-raising
Focus: identifying and pursuing sources of revenue for the Society.Expectations: working closely with trustees to shape promotional, marketing or educational campaigns and identifying associated revenue opportunities either through grants, commercial ties, merchandising or direct appeals.Desirable skills: experience within a sales or marketing environment. Experience of creating / managing web content.  2. Director – Clinical
Focus: bring a medical / research based perspective to The Society’s operations.Expectations: to be the main point of contact for all medical interactions between The Society and other parties. Responding to medical queries, interacting with other clinicians, ensuring all communications are correct form a medical perspective. Ensuring The Society and its trustees are up to date with regards to latest research. Essential skills: a medical professional with a track record of working with Vitiligo. 3. Director – Children & Education
Focus: identifying and delivering educational initiatives on behalf of The Society to also include a focus on under 18’s. Expectations: Driving The Society’s educational strategy within existing resource constraints. Leading all initiatives that involve improving members understanding of Vitiligo, making sure all initiatives are evaluated form an under 18’s perspective. Desirable skills: experience within the educational sector or working with youngsters who have Vitiligo or other similar conditions. Experience of creating / managing web content. 4. Director – Legal
Focus: all legal matters relating to the operations of The Society and its articles of association. Expectations: advise on legal issues including the AGM, interactions with Companies House, Charities Commission and employment law. Essential skills: qualified legal practitioner with experience of company law. 5. Director – Alliances
Focus: To act as the main point of contact for both national and international partnerships with vitiligo charities, working groups and medical/research organisations. We are looking for someone to grow our partner network in order to stay on top of the latest vitiligo information around the globe. These alliances are critical not only to providing the latest information to those living with vitiligo in the UK but also a channel for us to input our own feedback into these global initiatives. It’s important this candidate is personable, proactive and have an active interest in building relationships with vitiligo thought-leaders around the globe. An interest in the science/research behind vitiligo is a bonus!

For further details, check out https://vitiligosociety.org/become-a-trustee or email hello@vitiligosociety.org.

2019 has been an amazing year – Thank you.

Happy Holidays!

As 2019 draws to a close, we wanted to say thank you for all the support we continue to receive. Over the last year, The Vitiligo Society has continued to work hard to provide education and support for those living with vitiligo, raising awareness and promoting wider acceptance.

We have undergone a digital transformation, launching a fantastic new website and online magazine, The VitLife. We’ve continued to strengthen our partnerships with medical professionals and this has given our members the option to be a part of the latest research and trials.

We remain the primary UK charity and have expanded our reach by attending the US World Vitiligo Day conference. This allows us to influence the vitiligo community at a global level and report the latest news for our members and supporters.

Early in 2019, we completed a successful early private testing phase for Skin Deep, a new mobile app from The Vitiligo Society which is currently in development. It aims to provide therapeutic support for those living with skin conditions by providing tailored guided meditations to deal with difficult emotions. We received incredible feedback from our early testers and we look forward to moving forward with the project in 2020.

Overall, I loved the app and don’t have much to suggest or improve on. The audio and meditation content was amazing and spot on – it encompassed exactly how I felt as someone with a skin condition/vitiligo without being too condescending nor insensitive…

…I really love this app and the intention behind it. I look forward to using it more frequently once it is finished with development and truly appreciate what you have done.

If you’d like to know more, visit the dedicated Skin Deep website.

I’m also pleased to announce that this year we welcomed a new Trustee, John Dunster. By day, John is an HR Director for Centrica and brings a wealth of business operations experience to the Society. John has been a fantastic addition to the team and he’s equally as excited for the future of the charity.

The growth of vitiligo in the mainstream media grew astronomically in 2019 thanks to the brave models with vitiligo breaking into the industry. We’ve seen major brands such as Dove, Larsson & Jennings and Primark use models with vitiligo in their ad campaigns. Off the back of this trend, we’ve taken this opportunity to build relationships with media outlets in order to increase awareness and further educate the public on vitiligo.

Moving into 2020 and beyond, our aims are to further this progress, continuing our events, partnerships and education work, as well as looking into innovative ways that we can provide support to the vitiligo community globally, helping to inspire, encourage and promote a more inclusive atmosphere for those dealing with the condition.

Interested in volunteering in 2020?
Without our incredible volunteers, the Society simply couldn’t do what we do. They are at the very heart of our work. And we’d love you to join us.

Whether it’s raising money, increasing awareness, inspiring people to become a member or even with operational activities within the charity, we’ll find the right role for you.

In return, you’ll get to meet new people, gain new skills, boost your CV & LinkedIn profile – and feel good knowing you’ve helped people that are living with vitiligo on a daily basis.

If you’d like to know more about volunteering, please get in touch by emailing us at hello@vitiligosociety.org.

As a charity that is volunteer-led, with a small board of trustees, it is your membership, donations and support that keeps us going, we thank you again for this and wish you a happy and successful new year.

For and on behalf of the directors of the Society,

Yours sincerely,

Eyal Raveh
Chairperson, The Vitiligo Society

Black Friday? Cyber Monday? Give back by making a #GivingTuesday pledge

Giving Tuesday is a global day of giving, which encourages people and organisations to support charities and good causes that have helped, supported and positively impacted their lives. It is a day to shine the light on the good things that so many charities do, like the work of the Vitiligo Society. 

Created in the US in 2012, Giving Tuesday isn’t just about monetary donations, as the name would suggest. There are so many other ways you can give; such as volunteering your time, donating goods such as food or clothes, arranging a community event or bringing together a community of people to help support a good cause. The key to Giving Tuesday is simply, generosity. 

Since 2014, the UK has acted as an official partner of the global movement, which has seen positive growth every year as they bring charities, businesses and organisations together. The great thing is; people are keen to support including celebrities such as Victoria Beckham, Cara Delavigne and Michelle Obama. Alongside the social media campaigns and advertising, it is clear that people from all over the world are keen to give back, share their stories and reveal what it means to ‘give’.

So, today, on this global day of recognition, I wanted to share my own giving story as I reflect on my time at The Vitiligo Society. 

What inspires me to give back?

I have been a trustee at The Vitiligo Society since 2017 and I can honestly say its one of the best things I’ve done in relation to working with a charity. 

As a woman with vitiligo, the Society has always remained close to my heart so when I was asked to join the team as a trustee, I didn’t hesitate in saying yes. 

Being at the Society has given me the opportunity to give back to the vitiligo community. Like many people with the condition, I spent many years struggling to come to terms with the fact I had the condition because in the physical sense, it made me look so different to the average person. Growing up in the early ’90s and even the beginning of 2000 was difficult because there wasn’t the strong community network like there is today and there was no such thing as social media, which meant my only support was family and friends. Aside from talking to them, vitiligo wasn’t something I was open to discussing. 

Moving forward to current times and the vitiligo community is impressively large. I manage the social media accounts for the society, sharing inspirational stories, news within the community, photos and making every effort to inspire those who follow us. We get endless messages, in particular on Instagram, from followers who love the work we do, feel inspired by the images we share and most importantly have felt so empowered that it has encouraged them to be open about their skin. For me, it’s the most rewarding part about what I do because it makes a difference; it shows vitiligo in a completely different light….one that many couldn’t have imagined was possible. 

For me, being part of the Society has been life changing. Whilst being a trustee has developed a number of my personal skills, such as public speaking, presenting and writing as the editor of The VitLife, it has also allowed me to support others, especially the younger generation and those in their teens, who might be absorbed by Society’s ideals of perfection. Being part of the Society means we are able to remind the community that we too are beautiful and have a skin condition that is unique and something to be proud of. 

A few years back, prior to becoming a trustee, myself along with my mum, sister and a few other girls with vitiligo took part in a fundraising event called ‘Walk For Skin’, which was a 6-mile walk around Kensington, London. I’ll be honest in that fundraising isn’t something I have regularly done, however, raising funds for the Society because of the work they do, was something I felt honoured to do. I recall it taking place in the summer, sponsored by Denise Van Outen and a Hollyoaks actress, who joined us on the walk. It was an amazing day especially as I got to meet others with vitiligo whilst fundraising and donating to a good cause.

Please consider making a #GivingTuesday donation to help The Vitiligo Society further in our goals for 2020 and beyond >>

Zebedee Management are on the lookout for new models with vitiligo

Zebedee Management are on the lookout for new models with vitiligo! The modelling agency, which aims to redefine the perception of beauty, specialises in using models with skin conditions, disabilities and other indifferences. They already have a large portfolio of models signed to their books, however, are keen to get in contact with people with vitiligo. Here are some of the testimonies from some of the models that have worked with them: 

“It has been great to be a part of Zebedee Management. What truly attracted me to them is their push for changing the status quo in the fashion, beauty and TV industry and, having a prolific diverse range of models and actors, only embodies the true change that the industries need in order to see the right change. I would recommend Zebedee to anyone who wants to show their true beauty off, no matter what your difference. 

Shankar, a model with vitiligo 

“Getting signed to Zebedee Management has been amazing. Laura and Zoe have help me spread my message about my ‘Mark of Awesome’, AKA my Port Wine Stain birthmark. Having a visible birthmark on my face I want to encourage others like me to embrace their Mark of Awesome. I am so happy to have the backing of Zoe and Laura. Here is to a bright future ahead of us.” 

Jake, a model with a facial birthmark known as Nevus Flammeus 

On the other side of modelling, the Founding Directors of Zebedee, Zoe Proctor and Laura Johnson, have recently been approached to advise the Government on policy change around representation in the fashion industry. They have already started this work by attending the Houses of Parliament last month as part of a round table discussion to represent all disabilities and differences for fair inclusion. As the only specialist modelling agency to be invited, they felt really honoured to have had this opportunity. Zoe and Laura have been talking to our models/artists about the challenges they experience in this area to ensure their voices are heard and changes are forthcoming so that they feel represented, normal and valued in the fashion industry. 

Zebedee is particularly interested in providing fair and sensitive representation of children and adults with vitiligo, aged 0-99! If you would be interested in applying, please send 3 or 4 clear photos, (a mix of headshots and full-length), stating your date of birth, height, clothes size, location, availability, experience (none necessary) and some information about yourself (or the person you are applying for) such as personality, hobbies/skills and details of their difference and experience to: 

apply2zebedee@gmail.com 

Website: www.ZebedeeManagement.co.uk 

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Twitter: ZebedeeMan

Instagram: Zebedee_management 

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Calling all Hi-light Vitiligo Trial participants!

Thank you to all members of the Vitiligo Society who have participated in the HI-Light Vitiligo Trial.

Many of you will have finished using the light device and ointment for the trial. However, some of you will still be using the treatments. If you are still in the first 9 months of the study then it is vitally important that you keep in touch with your research nurse, even if you have stopped using one or both of the treatments for any reason. This is particularly important for the final 9 month visit. This is the most crucial time point for the trial; even if you have not been using the treatments, please take the time to see your nurse or talk to them over the phone. This is the visit at which you will get to compare your vitiligo with photographs taken at your first visit.

Please remember:

Vitiligo tends to respond very slowly to any treatment; do not be discouraged if there does not seem to be a response to treatment initially, and please continue with treatment as planned.The treatments can take some time to administer and we understand you may be too busy to use one or both treatments. If this is the case, it doesn’t mean that you should withdraw from the trial. On the contrary, data collected from participants no longer able to treat is just important as those still treating.If necessary it is OK to stop using one or both of the treatments for a period, and then start using them again at a later stage, so long as this is recorded in your treatment diary. The overall aim is simply to use the treatments as much as possible. Please do not feel like you cannot tell the study team if you have stopped using the trial treatments – it is really important to stay in touch!

If you have had your 9 month visit with the nurse, please look out for the follow-up questionnaires that we will be sending you every 3 months for a year. These will either be sent via email or post. If you have not received any questionnaires or any of your contact details have changed please do not hesitate to get in touch with the Hi-light Vitiligo Trial team email hilight@nottingham.ac.uk or tel 0115 823 1586.

Thank you for your continued support and participation in the trial.

“Vitiligo – My Story” Booklet published.

Last year, The Vitiligo Society collaborated with Birmingham Children’s Hospital on a children’s booklet series entitled ‘Vitiligo – My Story’.

Part of an ongoing series that brings focus to a number of conditions both children and adults suffer with, the ‘Vitiligo – My Story booklet was a great way to bring together the stories of regular children who openly shared both the positive side and sometimes negative side of having Vitiligo.

After months of constructing a great selection of stories in the form of interviews, we are pleased to announce the booklet is now ready to download. Please find a copy for your viewing here.

“A No-Nonsense Guide To Vitiligo” by Yan Valle now available

Up until recently, Vitiligo has often been regarded as a misunderstood  condition, with many questions around treatment, management and what to do  after diagnosis, remaining a ‘grey’ area. The No-Nonsense Guide To Vitiligo is what’s needed within Dermatology and by those who have Vitiligo.  

This guide is for those of you who have been looking for a better way to manage Vitiligo. In this smart and accessible book, Yan Valle – author, 
tireless campaigner and CEO of Vitiligo Research Foundation – cuts through the myths and misinformation that surround Vitiligo to tell you what you really need to know.   

A No-Nonsense Guide To Vitiligo is based on Yan’s years of research and practical experience. It contains the hidden truth about Vitiligo and its connection with other diseases, common household items, daily stress and environmental factors. 

Yan shares proven techniques you can use to detect the early signs of Vitiligo, identify potential triggers, be confident about available treatment options, their efficacy and possible side-effects. A thoroughly researched, easy-to-read and jargon-free guide to Vitiligo – this is essential reading for Vitiligo patients, or anyone interested or has a close connection with the condition. 

Now available in ebook and print formats through Amazon, iBooks, and Smashwords:  

Buy on Amazon now

About Yan Valle
Yan Valle is a writer, vitiligo spokesperson and strategist. He has written extensively on skin research and care, including numerous peer-reviewed publications, benchmark studies, and reports. He has also been a keynote speaker at many dermatological conferences. 

As a patient of Vitiligo since around six years of age, Yan has gone through every common pitfall known to a person diagnosed with vitiligo: misdiagnosis, years of non-treatment followed by bursts of mistreatment, self-prescription and self-medication, to name a few. 

As a professional, Yan went from nearly three decades in the high-tech and business development sector to become Chief Executive Officer of the non-profit Vitiligo Research Foundation, based in New York, USA.

Now Yan is actively involved in improving quality of life for those affected by this neglected disease at VR Foundation and the United Nations.  A frequent lecturer, Yan also serves as an visiting professor at the University of Guglielmo Marconi in Rome, Italy.

MHRA & BAD warning: Etin Skin Solution found to contain corticosteroid betamethasone

The Medicines and Healthcare products Regulatory Agency (MHRA) and the British Association of Dermatologists are today warning people NOT to purchase or use Etin Skin Solution, a lotion claiming to treat skin conditions and known to have been supplied from various Asian and African beauty shops.

Etin Skin Solution was brought to the attention of MHRA by a consultant at Birmingham Children’s Hospital who became concerned following a complaint by a patient. Investigations to identify the source of this product are being conducted.

MHRA has recently tested samples of the lotion and found it to contain variable amounts of the corticosteroid betamethasone. Etin Skin Solution is not authorised for use as a medicinal product in the UK.

Corticosteroids are prescribed to treat inflammatory skin conditions, especially eczema and psoriasis. Long-term use can cause skin thinning and can worsen conditions such as eczema. Another listed ingredient is clotrimazole which is used in anti-fungal medications.

There are strict legal requirements in place in the UK relating to the sale, supply, manufacture, distribution and advertising of medicinal products. The legislative controls seek to ensure that products meet certain quality and safety standards; a breach of these legal requirements may constitute a criminal offence. The MHRA investigates any report of suspected illegal activity concerning medicines, or medical devices, and takes appropriate action.

MHRA senior policy advisor, Lynda Scammell said “Our advice to anyone who is using this product, particularly on young children and babies, is to discontinue use immediately. People seeking help for skin conditions should discuss alternative treatments with their healthcare professional. Medicines containing corticosteroids should only be given under the supervision of a doctor or pharmacist.”

Professor Celia Moss, Consultant Dermatologist at Birmingham Children’s Hospital and one of the hospital’s staff who brought the product to MHRA’s attention, said: “We discovered the availability of this product after it had been used on the skin of a baby in our care. A nurse from my team visited the shop where it had been purchased and found it was freely available on one more than one occasion. We reported this to MHRA and are pleased it has been investigated and action taken.

“However this is just one outlet and it is hard to police every supplier. We are therefore warning people not to use Etin and to report its sale to MHRA. Anyone using a steroid lotion such as this is likely to perceive some short-term benefit, because steroids make red skin look paler. This is because steroids constrict blood vessels in the skin. Unfortunately on discontinuing the product the redness may come back, which of course makes people want to continue it. But to do so is unwise, and after a few days the skin will revert to its previous appearance.”

Dr Firouz Mohd Mustapa of the British Association of Dermatologists said: “Milder steroids for short-term, localised use can be purchased over the counter from a pharmacist, but potent steroids such as this must be prescribed by doctors, who follow strict criteria when prescribing them and monitoring patients using them. This is because they can suppress the skin’s response to infection, can thin the skin, and if applied long term over a wide area, particularly in babies and children, can cause other medical problems.

“For babies and children, NICE guidelines set out clear recommendations on when it is appropriate for dermatologists to prescribe these potent or very potent steroids, the appropriate locations of the body on which they can be used and the duration of treatment. Sale of potent steroid creams directly to the public is illegal for good reason.”

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