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Are calcineurin inhibitors such as tacrolimus (Protopic) and pimecrolimus (Elidel) safe for treating children with vitiligo?

When topical calcineurin inhibitors (TCIs) such as tacrolimus (Protopic) were first introduced, there was a theory that they could possibly increase the risk of skin lymphoma and so they were issued with a ‘Black Box’ warning in the USA. These warnings don’t mean that they definitely increase the risk of cancer, but there is a theoretical risk and since there was no long-term data to be sure, the Food and Drug Administration (FDA) issued this warning.

Since that time, there have been some studies which have demonstrated a very slight increase in the risk of skin cancer if these treatments are used in patients with atopic dermatitis (eczema), but the effect was very small and could have been due to other factors:

“Use of topical tacrolimus and pimecrolimus was associated with an increased risk of lymphoma. The low incidence rates imply that even if the increased risk is causal, it represents a small excess risk for individual patients. Residual confounding by severity of atopic dermatitis, increased monitoring of severe patients, and reverse causation could have affected the results.

The low absolute magnitude of risk…means that even if the increased risk observed is causal, the excess risk for an individual patient would be small.”

In fact, recently there have been studies which have suggested there is no increased risk. In a large cohort study (a study in which patients are followed up over a long time to look for longer-term patterns or causes for conditions), involving nearly 8000 patients over more than 300 sites in 9 countries, there was no increase in incidence of cancers in children treated with tacrolimus:

“Results showed that in over 44,629 person-years, only six confirmed incident cancers had occurred, none of which were lymphomas or nonmelanoma skin cancers.

Conclusion: The cancer incidence was as expected, given matched background data. This finding provides no support for the hypothesis that topical tacrolimus increases long-term cancer risk in children with atopic dermatitis.”2

On the whole I think that most dermatologists would say that TCIs are very safe to use, even in children, although in the case of children they are only specifically licensed for use in treating eczema, so when they are used for treating  vitiligo, it is an ‘off label’ use. However, many medications are used ‘off label’ in children, simply because there have never been clinical trials which specifically assess the use of those treatments in children, and there is nothing to suggest that they would be unsafe to use in children.

There is no clear guidance about how long TCIs can safely be used for treating vitiligo, so that is a difficult question to answer. The long term safety data for their use in treating eczema seems to be reassuring, although there are some studies such the first one above which have shown a possible tiny increase in cancer risk, which may be due to factors other than the TCIs.

If TCIs are used to treat either eczema or vitiligo, if there has been a good treatment response then it is generally good to try and reduce the frequency of use to the minimum required to maintain a treatment response. Commonly this would involve applying treatment only a couple of times per week.

Author: Jonathan Batchelor

1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5856050/

2 https://www.jaad.org/article/S0190-9622(20)30498-9/fulltext

Sun Awareness Week and protecting your skin against the sun

This week is Sun Awareness week – a campaign dedicated to raising awareness and highlighting the dangers of sunburn and excessive tanning.

The national campaign launched by the British Association of Dermatologists (BAD), aims to raise awareness of skin cancer, one of the most common types of cancer. In previous years, as part of there aim to educate the public, the BAD have organised mole checks, introduced Team GB’s Louis Smith and Greg Rutherford as Sun Awareness Week lifeguards and have also organised a ‘Don’t Bake, Bake’ campaign, encouraging people to bake treats to eat rather than bake in the sun.

Every year a theme is chosen and this year it is early detection which focuses on the importance of understanding our skin, examining moles that could potentially be cancerous and spotting any potential warning signs.

In a report released in 2017, it was revealed that more than 1 in 3 people (35%) were burning their skin every year in the sun, with a further 46% admitting to burning their skin whilst abroad. 

For those with vitiligo, it is imperative that we protect our skin, not just during the official summer, but all year round, as even when you think there isn’t much sunlight, the sun’s rays are still very much present. It has always been highly recommended that those with the condition invest in a good, quality sun cream that offers a high level of protection against the sun’s UV rays. Often there are many questions raised around the meaning of SPF, why the sun can put our skin in danger and why we need to wear a high SPF, so we thought we’d share the basics in what you need to know:

What is SPF?

SPF stands for sun protection factor and is often the first thing you will notice when purchasing sun cream. The SPF number that can be as low as 5 and as high as 100, tells you how long it would take for the sun’s UV radiation to redden your skin when exposed to the sun. For example, if you are more prone to burning after 10 minutes of being in the sun, using an SPF of 15 means you are likely to burn after 150 minutes (15 times longer) as opposed to an SPF of 50 which means you will burn after 500 minutes. An SPF of 50 blocks around 98% of the sun’s UVB rays.

UVA vs UVB – What’s the difference?

UV stands for Ultraviolet radiation and the UV rays you are likely to be most familiar with are UVA and UVB. UVA has longer wavelengths meaning the rays penetrate much deeper into the skin, way beyond the top layer; the epidermis. Long term exposure can lead to ageing skin and wrinkles, potentially causing long term damage. UVB, on the other hand, has shorter wavelengths meaning it causes the most damage to the epidermis – the top layer of the skin. It’s these rays that can cause burning on the skin, redness and can potentially cause skin cancer.

Why is it important that those with vitiligo protect their skin?

Those with vitiligo burn easily in the sun due to the lack of melanin in their skin. It’s the reason why it is imperative that we protect our skin with a sun cream that has a high SPF. Choosing the right sun cream is one of the most commonly asked question amongst the vitiligo community because those with the condition are often very conscious about protecting their skin against skin cancer. Using a good, quality sun cream with an SPF of 50 or above will help protect the skin as Professor David J Gawkrodger, Professor emeritus in dermatology, University of Sheffield points out;

‘It is important for people with vitiligo to cover up with clothing and use a high factor, i.e. factor 50 or above, sunblock during the warmer months. There are two reasons. One is to prevent the normally pigmented skin from pigmenting more and this making the vitiligo areas more prominent. The other is that sunburn can make vitiligo extend and may start a new area off’. 

There are so many ways in which we can protect our skin in addition to applying sun cream. Here’s how you can do that:

The sun is at it’s strongest between 11am and 3pm, so where possible seek shade during this time period to avoid to much exposure and always keep babies and young children in the shade as much as possible.Ensure that you reapply sunscreen throughout the day – applying once simply isn’t enough. If you are going to be in the sun during long periods where there is a risk you may burn, apply at least twice a day or every 2 hours.If you are planning to swim, use a water resistant sun cream, especially as UV rays reflect off of water increasing your exposure.Wear protective and loose clothing – a hat to protect your scalp, sunglasses to protect your eyes and long sleeved tops and trousers. Close weave fabrics are a great option as they act as a barrier to sunlight.Apply sun cream at least 30 minutes before exposing yourself to the sun. This leaves time for the cream to penetrate the skin and settle ensuring that you are protected by the time you find yourself walking in the sun. Drink plenty of water to ensure you stay hydrated. The average intake of water is 1.5 – 2.5 litres a day, however, during the warmest months this ideally needs to be increased.

More information on Sun Awareness Week is available in the link below:

https://www.bad.org.uk/skin-cancer/sunscreen-fact-sheet

Research Findings: The Positive Lived Experiences with Vitiligo

Aasima Patel, a post graduate from Manchester Metropolitan University, recently carried out a study that aimed to explore the positive lived experiences that some people with vitiligo, can have. In this feature, Aasima shares her findings and some of the key things she discovered from interviewing those with the condition.

Hi Aasima, thanks for sharing your research, can you share what motivated you to focus your research on vitiligo? 

I was born with what my parents assumed was a birthmark on my leg, but when I was about 7 years old a similar mark appeared under my eye and started spreading. Shortly after I was diagnosed with vitiligo. At the time there wasn’t much information available about vitiligo and my parents were really concerned about how the condition would affect me growing up.

My parents initially tried to treat my vitiligo, however, as I got older and became accepting of my skin, they too, learnt to accept it. Vitiligo became part of who I was and my identity and I made sure I didn’t let it define me.

I found that my immediate family and the kids who knew me at school were really supportive of me and my unique appearance, but this wasn’t always the case, especially when I was around people I didn’t know. I found that some communities and cultures were less understanding and could even be rude or dismissive about my skin, which is something many others with vitiligo have experienced, including my research participants. I understand that the condition can be very challenging and I wanted to focus my research on something I had lived-experience of.

Despite the difficulties you faced, you still chose to conduct a study which focuses on the positive psychological impact of vitiligo. Why did you make this the focus of your research?

Whilst there is a lot more information available that explains what vitiligo is, there is very little that focuses on the positive aspect of having a skin condition. This was also reflected in the scientific literature I read.  For me, this wasn’t acceptable as I always felt optimistic about my skin, and I knew I wasn’t the only one that had developed a positive outlook. As a researcher, I wanted to see science acknowledge this.   

We know your research is currently being published; can you share any of your significant findings with us?

Through qualitative analysis of participant interviews, it was found that participants experienced both positive and negative attitudes from people regarding their visible difference. The impact of this, meant that they had built resilience to any negativity aimed at their skin and which ultimately started them on their journey towards developing a positive attitude towards their skin.

Participants felt passionately about the importance of normalising vitiligo in society and raising awareness through education to enable society to see the positive experiences that people with vitiligo can have. Through knowing the importance of protecting their skin and feeling passionately about their skin, participants also developed a strong awareness of their overall wellbeing and took steps towards adopting healthier lifestyle behaviours in relation to their body and their skin.

Through their own personal experience with vitiligo, participants expressed that they developed more empathy and appreciation towards other people similar to them – they understood that everyone has differences and the importance of being appreciated for them.  Additionally, it made participants feel confident, empowered and comfortable in their skin. It enabled them to be more ambitious and achieve their goals and wasn’t something they wanted to reverse as they felt it was something that should be celebrated and embraced.

Were you surprised by any of the results from your research?

I learnt a lot about myself through conducting my research and was surprised by the impact vitiligo had on so many aspects of my life. Participants shared a number of themes that I related to and didn’t expect, and which weren’t necessarily linked to vitiligo. For example, a strong focus on self-care (both physical and psychological), being more accepting and empathic towards other people’s differences and the strong desire in normalising vitiligo in society (as other skin conditions are) so that other people wouldn’t be so alarmed when meeting people with the condition.

What do you want people to take away from your research?

People with vitiligo have various experiences living with the condition and the impact it can have on their lives differs.  They can go through a journey in which these experiences allow them to develop an appreciation for their skin including valuable positive characteristics, such as resilience, self-esteem and self-efficacy. Those included in my study were proud of their skin and felt that it had given them a desire to overcome the stigma associated with the condition and encouraged them to embrace their skin and educate others.

I hope my research will raise awareness and also encourage self-acceptance and confidence. I would like to think that I have provided some reassurance to parents of children with vitiligo, or adults newly diagnosed that there are positives to the condition that can really propel you to gain so much more from life through achieving self-acceptance, applying resilience to all areas of life and believing in your abilities.

What’s next for you?

I want to continue focusing on vitiligo and helping people to gain confidence in their skin. I also want to encourage society to be more tolerant of differences so that people living with vitiligo, like myself, don’t feel any pressure to change how they look and can feel supported. I have created an Instagram page (@positiveliving_23) to help me do this in addition to raising awareness of vitiligo in general.

Main photo posed by models.

News

Vitiligo Society Virtual Summit 2020 now available to stream online!

On Friday 11th December 2020, The Vitiligo Society hosted a virtual summit, the first of its type in the history of the charity. We are delighted to announce that the recording of this event is now available to view.

The event saw 3 incredible speakers presenting the latest developments in relation to vitiligo:

Dr John Harris

Dr John Harris is a dermatologist and Director of the University of Massachusetts Vitiligo Clinic and widely recognised as one of the leading figures related to vitiligo research. He joined us as our keynote speaker where he presented the state of play for vitiligo research, current treatment options and what the future holds in relation to research.

Dr Viktoria Eleftheriadou

In 2020, new guidelines in relation to managing vitiligo were updated by the British Association of Dermatologists (BAD) and Dr Viktoria Eleftheriadou presented on how the guidelines have changed since the last update in 2008.

Dr Alia Ahmed

Consultant Dermatologist & Skin Wellness Expert, Dr Alia Ahmed, focused on mental health in relation to skin conditions and how visible conditions like vitiligo can impact our wellbeing. She also shared some insight into the recently released report by the All-Party Parliamentary Group on Skin (APPGS). Dr Ahmed has previously featured on BBC Radio 5 Live, Vogue, The Times and The Daily Mail.

Click on the link to view the summit: https://www.youtube.com/watch?v=x6u6VT4DExc

Help support our vitiligo bear project!

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

This means we now have just 40 days to raise the funds we need in order to make vitiligo teddy bears available to children in the UK for years to come.

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 does the Aviva Community Fund help?

Aviva gives all it’s employees £25 to pledge to a project – if we can reach our target then these pledges turn into donations. The more our community supports the project, the more Aviva employees will see how important it is and (hopefully!) pledge their support.

How you can help

We need to raise an additional £3,464 to make this project a reality.

Please visit the project page and consider donating, sharing it with friends and family, or fundraising to support it.

Participants required for University of Sheffield writing intervention study

Psychologists at the University of Sheffield are reaching out to our members to find participants for their new research study.

The study seeks to understand whether a brief online writing intervention could help individuals living with visible skin conditions to improve their body image.

The study comprises of three fifteen-minute writing tasks over the period of a week. Participants will also be asked to complete a series of questionnaires before and after the intervention.

In order to be eligible for this study you will need to be over 18 years of age and living with a skin condition that negatively impacts on your relationship with your body.

If you would like to participate in this study, then please click here to read more information and sign up.

The study will be open to new participants until the end of April 2021.

New study from the Centre for Appearance Research

The Centre for Appearance Research at the University of the West of England is looking for participants to support a new study.

The study seeks to understand the experiences of adults with vitiligo who use social media. Participants will be asked to complete an online survey which will explore how they use social media in relation to their condition (e.g. support groups, forums etc).

In order to be eligible to participate you will need to be an adult, living with vitiligo, and actively using social media.

The study is being conducted by Nicole Hendy and supervised by a Research Fellow at the Centre of Appearance Research.

In order to participate, please email Nicole directly: Nicole2.Hendy@live.uwe.ac.uk

The Vitiligo Society launches the Parent Support Network

We are excited to announce the launch of The Parent Support Network (PSN) – a support group dedicated to children, parents and carers of children with vitiligo.

Historically known as the Parent Support Group, our vision for the group is twofold: to provide support for those who have questions or concerns relating to vitiligo and two; and to create a space where parents can feel supported and listened to, whilst being able to ask questions and feel reassured in an environment where you may share common concerns.

We will eventually look to hold community events to enable children in the UK to meet with each other, whilst providing an opportunity for parents to interact with one another. In the meantime, given the current restrictions in relation to Covid-19, we have decided to launch a Facebook page as a way of bringing parents together online, click here to join the group.

Alongside the Facebook group we will also be hosting our first online event for the network, to give parents, carers and children a chance to say hello virtually. The even is free to join, and will be held on Saturday 22nd April. Click here to visit our event page for more information and to book your place.

The Parent Support Network will be led by a small group of volunteers all of whom have children with vitiligo, or have personal experience of growing up with the condition.

Denise Oduntan, one of the PSN leaders, shared why the network was so important:

As parents, we felt it was really important to have a place that people can go to and ask the questions that are specifically related to children. It can be so confusing when your child is diagnosed and having a community that understands what you’re going through and can help navigate the challenges is really helpful. We also thought it was very important that children meet and see other children that look like them. We are really looking forward to when we can have ongoing live events with activities for children.

Why not consider joining the PSN management committee?

As part of the launch we are seeking parents and carers who would like to be involved in organising and leading the network – if this sounds like something you would be interested in then please email us at parentsupport@vitiligosociety.org.uk

FDA request your comments on recent patient-focused drug development meeting

On March 8, 2021, FDA hosted a virtual public meeting on Patient-Focused Drug Development for Vitiligo. FDA was interested in hearing patients’ perspectives on the impact of vitiligo on daily life and patient views on treatment approaches. In this news article we catch up with event attendees to reflect on the event, and also share how you can still influence this groundbreaking moment for our global vitiligo community.

The significance of the event for people in the UK 

The FDA has formal and informal relationships with their foreign counterparts across the globe. The FDA’s international programs have grown and its experts are often called on to direct, manage and coordinate the growing body of international work involving the World Health Organisation and International Conference of Drug Regulatory Authorities. Although we have our own regulatory bodies in the UK, developments in the US will without doubt influence decision making across the world. This was an excellent opportunity for people living with vitiligo in the UK to speak alongside the US community and be heard by a key player in vitiligo treatment decision making. 

What we took away from the event

This event was an incredible recognition of the great work medical professionals and patient support groups are doing in the US to raise awareness of vitiligo and the need for better treatments. It sets the bar for what we need to be doing with our own regulatory bodies in the UK to give better treatment options for our own vitiligo community.

Dr Richard Huggins shares his reflections with us

Now specialising in vitiligo, Dr Huggins first came across the condition in medical school in 2004. He was struck by how common the condition was and how many unanswered questions there are. Currently working in the Henry Ford dermatology department in the US, Dr Huggins is also Chairman of the Vitiligo Support section of the Global Vitiligo Foundation.

How significant do you think the event was for our global vitiligo community?

‘I thought it was one of the most important things that has happened to the vitiligo community ever. The fact it even took place, shows vitiligo is now high on the FDA radar. The FDA has only had around 30 patient focus meetings like this, only 3 of which were dermatology focused. What is really exciting is how organically this meeting happened, the FDA heard about the growing interest in treatments, support group growth and the increased awareness of the condition, and all this culminated in the FDA deciding it needed to hear directly from people living with vitiligo. 

This is a big moment for the vitiligo community to recognise that their condition is important to the US government, and that the government is acknowledging that more attention and treatment is required. 

For me, an unexpected benefit of the event was all the unifying discussions prior to the meeting.  Support groups came together to talk strategy and how to maximise the impact of the event. These conversations really bought the community together, and led to further discussions on how to work more collaboratively in future. 

Over 1000 people registered, 700 of which had vitiligo and 300 of which were from industry (pharmaceutical companies) or were medical professionals – to have all these people wanting to learn and hear more about how vitiligo affects people, and gaps in treatment, was incredible.’

Did you have any perceptions that were challenged by the event?

‘I have worked with local vitiligo support groups for 12 years, and worked nationally for 7 years – so I thought I really understood the impact of vitiligo. Hearing individuals share their experiences at the event really deepened my understanding of the personal impact of the condition. 

I left the meeting with an even greater appreciation for the extent to which vitiligo affects people’s lives. I knew ahead of time that the treatments don’t always work, but hearing first hand how ineffective, slow working, messy and disruptive treatment can be – I truly understand now that we have a long way to go in terms of developing the effective, practical treatments and the cure that people need.’

What will you be taking away from the event?

‘Physicians, myself included, need to communicate better to colleagues that don’t specialise in vitiligo. So many people going to a doctor are being dismissed for it being cosmetic or untreatable. We need to encourage our colleagues to speak with empathy, understand the impact of vitiligo, and have a better awareness of the treatments that are available.’

Any final comments?

‘For me the purpose of the meeting was to inform the FDA’s risk-benefit analysis when a pharmaceutical company seeks FDA approval for new treatments. The meeting was really successful in showing the need for new treatments but patients need to make it clear their risk-tolerance for new treatments and studies. 

The FDA is still open to comments from the event, so I hope everyone in our vitiligo community will take this opportunity to share their thoughts on the need for new treatment development.’

Alicia Roufs shares her thoughts with us

Alicia Roufs is the marketing director of a US based national non-profit group called VITFriends, a vitiligo support community. She is also the founder of the local VITFriends support group in Minnesota which currently has 250 members.  Alicia has had vitiligo for over 43 years.

Why did you feel it was important to attend the event?

‘I have spent many years telling people that vitiligo is NOT a cosmetic condition! We have fought hard to have medical people, pharmaceutical companies, and elected officials to take vitiligo seriously and recognised it as an autoimmune disease. So attending a 1st ever FDA drug development meeting was history in the making for vitiligo.’

As someone involved with vitiligo support groups, how significant do you think this was for people living with vitiligo?

‘I think the significance of the event was groundbreaking. Finally we have a huge government agency recognizing vitiligo as a serious condition that needs their attention. We have heard in the past that these FDA meetings have led to huge changes for other diseases that included large funding for research and better drug developments.  

It was great to hear stories of the 10 panelists and 6 conversation starters.  I was asked to be one of the large group conversation starters, so I was able to share my story briefly. It was an honor to be a part of it. There was also an option for people to call in, and we heard several amazing stories of struggle and hardship that people have gone through with vitiligo. I’m hoping this will leave a huge mark on the FDA representatives’ hearts.  

The downside I had of it was not being able to see everyone’s faces and not knowing how many people were actually on the webinar. We were told 1020 people had registered. So that was a bummer. I also wasn’t a huge fan of some of the survey questions.’  

Do you have any last reflections to share with us?

‘I really hope and pray that this will make headway for new therapies for vitiligo or for FDA to approve already used practices for vitiligo.’

Join your voice to the cause

The key question for the FDA to gauge is whether the vitiligo community would prefer to see more approved treatment options (even if these options may not provide a permanent, effective and risk free treatment for everyone), or if the most important thing is for only perfect, guaranteed treatments to be approved.

The deadline for leaving comments 10th May 2021, so it’s not too late to have your say and join your voice with the 1000’s of people who attended the meeting.

You can view the full recording from the event here

You can submit you comments about the event here

Clinical Research Training Fellowship announced in Adolescent Dermatology

The Medical Research Foundation recently announced that it was co-funding with the Medical Research Council (MRC) a Clinical Research Training Fellow (CRTF) in Adolescent Dermatology.

The funding competition is now open and details can be found on their website.

The Medical Research Foundation stated that:

Applications are welcomed from clinicians who have the potential to be the research leaders of the future, whose research will increase understanding of the disease mechanisms underlying adolescent skin disorders. Funding may support research that will address the biological questions surrounding skin disorders of relevance to adolescents, such as acne, eczema, psoriasis, rosacea, alopecia and vitiligo.

Full eligibility and remit details are available on the MRC’s webpage for Clinical Research Training Fellows.

Applicants may apply for salary costs and up to £20,000 research costs per year, for up to four years.

There are three opportunities per year to apply for a clinical research training fellowship. See the MRC’s deadlines page for details of opportunities to apply for the scheme.

To apply, please visit the MRC’s dedicated CRTF page.

Catherine Davidson joins our Board of Trustees

We were delighted to welcome Catherine Davidson as our newest member of The Vitiligo Society Board of Trustees. Catherine has been a member of The Vitiligo Society for a number of years prior to joining the board in December 2020.

The Board of Trustees are a group of volunteers all of whom have been affected by vitiligo in some way. They give up their time to ensure that our charity is governed correctly and continues to meet its charitable objectives.

Catherine was diagnosed with vitiligo as a student and found it hard to find information about the condition. She is keen to increase awareness about vitiligo, provide support and advice to others and help the society contribute to research efforts.

Here’s what Catherine had to say about joining the Board:

It has been great to join a team of such enthusiastic and committed trustees. As we develop our strategy I am excited about the future of the Society and how we can work even more effectively to support our members and help beat vitiligo

Catherine has 20 years of experience in government relations, predominantly in the financial services sector, and has worked in Brussels and London. In her spare time Catherine likes to dance, carol sing and is currently learning Gaelic.

You can find out more about how to join our Board by visiting https://vitiligosociety.org/news/volunteers-needed/

Funding from the Vitiligo Society supports new research in the psychological impact of vitiligo

At the end of last year we were approached by the Vitiligo clinic at St John’s Institute of Dermatology, led by Dr. John Ferguson (Consultant Dermatologist) and including clinical psychologist (Dr. Mark Turner), requesting funding assistance for a new research study their team were planning.

The research team were interested in exploring explanations as to why people with Vitiligo experience poor health-related quality of life and distress. In particular, they were interested in if such explanations
include illness perceptions and stigma.

What are illness perceptions and why are they important?

Illness perceptions refer to a patient’s beliefs about the nature, cause and effects of their health problem. They are formed based on a person’s personal and family-based experiences with illness as well as those formed by visiting professionals. Illness perceptions have been shown to offer a strong explanation for why people with a number of long-term illnesses experience poor outcomes, such as depressive mood, anxiety, and impaired quality of life. This finding holds true even after accounting for more objective measures of skin disease used in the dermatology department.

What makes this research unique and important?

The research team were unaware of any other clinical – academic group currently researching both illness perceptions and stigma in the same comprehensive vitiligo study.

We believe that it is important not to assume that the management of skin conditions is entirely about medical treatment and indeed psychological support is likely to help too.

Why we felt this research was a priority for funding support

Denise Oduntan, trustee of The Vitiligo Society explained:

As a society we felt this research was important to fund as it seems to be the first of its class. We know that many people that have vitiligo suffer from mental health issues and we feel this study can help shape the support that vitiligo patients have access to. We are also very aware that people from different cultures suffer different levels of stigma and this study can really help to understand that more.

We are looking forward to sharing the results of this research with you all soon!

The Vitiligo Society is selected for Google Online Marketing Challenge Programme

We were delighted to hear that The Vitiligo Society had been selected to participate in the Google Online Marketing Challenge Programme.

The Online Marketing Challenge offers a unique opportunity for students to get real-world experience of creating and executing online marketing campaigns.  

A student team (pictured above) from Université d’Angers. Francesca Rizal, Victor Riviere, Julien Petitot and Axel Odjo have been matched with our Society and allocated a $10,000 monthly budget of in-kind Google Ads to help increase awareness of the vital work that we do for the vitiligo community.

Our Chairman Simon explained:

The Google Online Marketing Challenge will help The Vitiligo Society optimise the AdGrants search engine advertising budget that is donated by Google. The more frequently our ads appear next to Google search results, the more people will be aware of our mission of raising awareness, reducing stigma and providing support to those living with vitiligo and their families. This is also translated into more memberships, donations and volunteers – the lifeblood of The Vitiligo Society

As well as being a brilliant opportunity to create awareness for our charity, the challenge also provides some valued work experience for the student team. The team, pictured above and led by Francesca Rizal, explained why participating in the challenge was important to them:

 The Google Online Marketing Challenge is a real opportunity for us to apply the SEA knowledge we learn in our courses. This year, we are pleased to collaborate with a charity committed to a cause that is close to their hearts. The Vitiligo Society works daily for people living with this condition, informing them about medical practices, listening to them, but above all being present to help them accept themselves. 

What we hope to accomplish with this challenge is to give a real boost to the members of this charity, whether it be through the development of their network, or by increasing the donations they receive. In any case, this will enable the charity’s volunteers to have more key solutions to propose more and more initiatives to support people living with vitiligo. We are aware that this cause is important to them, so we will give everything to help them as best we can. 

Once the four-week campaign period is over the student team will be providing us with a report of their achievements along with recommendations and insights of how we can continue reaching more people with vitiligo across the globe.

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