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We are building a meditation app for dealing with skin conditions

  • Therapeutic support for dealing with difficult emotions
  • Professionally scripted meditations by certified psychotherapists
  • Choice of different voice overs to suit your taste

You are more than skin deep

Begin your journey

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.

Managing the psychological impact of vitiligo

I developed vitiligo when I was a baby, so I was completely unaware that I had it until I was a little older. The sudden appearance of two penny-size patches of milky white skin – one on my inner anklebone and the other, half way down my spine – puzzled my parents yet didn’t bother me at all.

When I was around seven years old, one of my eyelids turned a pinky-white colour which unsettled me because suddenly it looked as though my lashes had been bleached. I can remember wondering what was happening to me. When my mother took me to see our GP, he told her that I had vitiligo and that it was harmless, which should have been reassuring. But it wasn’t. From that point on, my few white patches were no longer my only vitiligo symptom because I developed a succession of others which I now realise impacted me psychologically and became proof that vitiligo is much more than skin deep.

Not just a harmless skin condition

For generations vitiligo was labelled a “cosmetic” disorder and patients were simply advised not to worry about it. Even today I frequently hear from other vitiligo sufferers who feel their doctor isn’t taking their concerns seriously. Thankfully, times have since changed and the medical profession have recognised that vitiligo is more than just a harmless skin condition. There is awareness of its emotional impact, largely thanks to the combined efforts of vitiligo advocates, charities, researchers and the online vitiligo community.

Increased awareness is bringing about positive changes in the way health professionals and the public see vitiligo, as well as in the way we see ourselves. This change in how vitiligo is perceived has, for some, made living with vitiligo less distressing from a psychological perspective. Some of this is to do with media interest in vitiligo which has made vitiligo more acceptable and eliminated misconceptions such as it being a mysterious “curse” that no one ever talks about (which is what it felt like when I was growing up).

What are the psychological effects of vitiligo?

We all react to having vitiligo in our own particular way. Some individuals manage to focus on the positive aspects. They feel grateful that it is neither physically painful nor life threatening. They look for the beauty in their unique skin formation and some even creatively turn their white patches into body art. But I can imagine that the majority of us have struggled with much darker thoughts at some stage during our journey, whether that be infrequently or on a daily basis.

Drawing on my own experiences and friends with vitiligo that I’ve been in contact with globally, I know that the negative mental effects of vitiligo can range from mild frustration to feeling anxious, lonely and severely depressed. Usually, our emotions are less extreme than this but they tend to cycle through various stages at different times. One participant who carried out research into the psychological burden of vitiligo described the fluctuations in his feelings as being: “grief, fear, grief, anger, grief, and acceptance”, whilst, a teenage girl, admitted to telling herself repeatedly that she was ugly and that she must be a horrible person as the reason why she developed the condition. Maybe you can relate to these stories. I certainly can.

I remember my emotional state was like a pendulum, swinging from high to low and back again in an instant. My entire outlook on life would change, based on some apparently insignificant event (sweating off my self-tan on a hot day) or an innocent question (“I’ve never seen you in the pool – don’t you swim?”). The mental anguish that such moments produced was out of all proportion to the circumstances. But each occasion was another blow to my fragile self-image, almost as if my personality was being eroded along with my skin colour. In fact, I think the dermatologist Dr. Iltefat Hamzavi captured the feeling perfectly when he described vitiligo as “white patches on the skin that affect the soul”.

That said, if your vitiligo causes you emotional distress, then this is an acceptable way to feel. Most of us manage to live a normal life and put on a brave face as far as the rest of the world is concerned. I don’t think that even my nearest and dearest ever really knew the inner turmoil I experienced on a regular basis and I’m guessing I am pretty typical in that respect. We become experts at adopting coping strategies to mask the difficulty in managing vitiligo.

Coping strategies

Personally, I used to hide my white patches under clothing and make-up. Doing this helped me to pretend they didn’t exist. The strategy worked pretty well for half the year. Well enough, in fact, for me to get on with life and almost forget I had a skin condition at all. But, as soon as the warmer weather arrived, my mood would nose-dive because I had to resort to more time-consuming ways of covering up, like using self-tanners or camouflage creams on my arms and legs and searching for garments that were comfortable enough for hot days but still gave me maximum coverage. There was also the hassle of avoiding social situations that might draw attention to my skin, like sun bathing or playing sports.

My greatest dread was that others would notice my blotchy skin and stare or make comments. In fact, as I lost more and more pigment, life became increasingly complicated and stressful. Covering up became harder and more time-consuming – exhausting even. Not only that, but my constant efforts to hide the changes in my appearance were making me increasingly neurotic. I thought about almost every daily decision and activity in terms of how it would affect my ability to conceal my vitiligo. I often felt quite alone and alienated from the rest of the world. It felt as if I was the only person on earth going through this ordeal.

As if these negative emotions were not damaging enough, I can remember also feeling guilty about how I was feeling. I knew there were a lot of people in the world worse off than me and so I felt that I should be thankful for my blessings. But I couldn’t understand why this didn’t make me feel any better. I now realise that understanding why we feel a certain way is an important step to take before we can really start feeling better.

Why does a skin condition like vitiligo cause such psychological distress?

Unexpected changes in our appearance are hard to deal with. Knowing what to expect when we look in the mirror is something we take for granted, so seeing an altered reflection is like suddenly entering “the twilight zone”.For any human being, coming to terms with the gradual visual process of ageing is bad enough. But the progressive and unpredictable nature of vitiligo forces us to confront change much faster, sometimes from one day to the next.Our lack of control over these changes can result in fear, panic, anger or a general sense of helplessness.It can also cause anxiety over what strangers may think of how we look, as well as making us feel we need to explain the changes to our friends and family.

We care about how we see ourselves

Our skin is our largest organ. It covers our entire body and is something we look at every day. Therefore, we have a strong desire to feel comfortable in our skin, and if we don’t, it can undermine our self-confidence.The colour of our skin is one of the things that makes us who we are. It’s an integral part of our sense of self. It can also be a precious part of our cultural identity, so unexpected changes that we have no control over can chip away at our self-esteem.Vitiligo is in the eye of the beholder which means that the way we see ourselves does not depend on how conspicuous our vitiligo is. In fact, research shows that someone with fair skin and just a few vitiligo patches may feel just as distressed as a person with dark skin and widespread vitiligo.

We care about how others see us

As human beings, we tend to judge each other based on first impressions and outward appearance is a key factor in this.Aside from the clothes we wear, our skin is the outer packaging in which we present ourselves to the rest of the world.Fear of what strangers may think of our appearance can make us feel insecure.Certain cultural taboos and stigmas relating to vitiligo may cause embarrassment, social anxiety and depression.

So, how can we deal with the psychological stresses vitiligo can cause?

One of the most effective and obvious ways to eliminate the negative psychological effects of vitiligo would be discovering a cure for the condition. But, given that science is still some way off from achieving this goal, how can we otherwise manage such feelings in the meantime? I’m no psychologist but, as someone who has stumbled my way through life in pursuit of answers to this question, I have found various solutions that worked for me, so I would like to think they could work for you too.

1. Focus on self-acceptance

I have found that a good starting point for dealing with vitiligo in a positive way is to give is to give it recognition and focus on it being a non-threatening skin condition that affects millions of people globally. Self-acceptance can be incredibly liberating. It does not mean you necessarily have to embrace your white patches, as some people do, it just means that you can avoid feelings of anger and resentment.

2. Let go of stress

Letting go of stress should be a natural consequence of accepting your condition, however, it is worth exploring other situations that can lead to stress and trying to minimise where you can. Activities such as meditation, exercise and relaxation can help with reducing stress levels. Not only is this important for your wellbeing, but also for your skin, as stress can often make vitiligo worse and psychologically knowing this can often make some of us feel more stressed.

Personally, I prefer to focus on the healing benefits of de-stressing, rather than how being stressed can make us feel. Looking at it from this angle helps me to see that being kind to myself is not selfish, but rather therapeutic, with the added benefit of making me feel better within myself.

3. Nurture your self-esteem

Taking time to de-stress and being kind to yourself will automatically nurture your sense of self-worth, which may have been affected as a result of your vitiligo. Perhaps you have unconsciously allowed vitiligo to define who you are. Reminding yourself who you are as a person is a good way to restore your self-esteem as you are still the same person you were before you developed vitiligo. Think about your strengths and accomplishments, your talents and passions and think of the people who love and appreciate you for all your special qualities and how you make them feel.

Imagine what you would say to your best friend if they were the one with vitiligo. Would it change how you felt about them? Of course not. Would you want to see their spirits dampened because of their skin? Of course you wouldn’t! So why let vitiligo do that to you? The person you are has nothing to do with your skin and everything to do with your unique and irreplaceable spirit.

4. Reach out to others

I realise now that reaching out to others would have given me a huge psychological boost when I needed it the most. However, during my childhood, teenage years and young adulthood there was no one to reach out to. No one else seemed to have even heard of vitiligo. Even my doctor had dismissed it pretty quickly and whilst my parents were sympathetic, they had no way of knowing how alone it made me feel.

Today it’s a different story. There is no reason for anyone with vitiligo to feel isolated or unsupported. Awareness of the condition has increased massively and there are numerous websites and social media platforms where you can find reliable information, inspiration and a sense of community as well as local vitiligo support groups in many regions. In fact, it has never been so simple to find knowledge, encouragement and mutual support as it is right now.

Reaching out to other people with vitiligo online or in person is a powerful way to deal with your issues and concerns at the same time as helping other people deal with theirs. Getting to know others, asking for their support and offering yours in return is a comforting and enriching experience, not to mention a perfect antidote to self-pity.

No matter how supportive friends and family may be, there are times when only another person with vitiligo can fully appreciate what you are going through. Having said that, if you ever feel you are simply not coping mentally and things are just getting worse, that is the time to ask for professional help. There are a number of highly effective therapies, which come under the umbrella term of psychodermatology, that can enable you to deal positively with the emotional and social impact of vitiligo. 

5. Empower yourself

One of the most disconcerting things about vitiligo is that it can leave you feeling powerless. The first time I heard the word “incurable” it felt as if my life had been hi-jacked. But it finally dawned on me that meekly handing over control of my future to a bunch of militant melanocytes was absurd and once I started to think about it in those terms, I realised that there are hundreds of ways to take back control. Here’s how I’ve done that:

Take back control of your skin

Knowledge is power. The more you learn about vitiligo, the better equipped you will feel to deal with it both practically and mentally. Keeping abreast of vitiligo news reminds you there are a lot of good things happening in terms of awareness and research.Vitiligo may not be curable yet, but it is usually treatable. Just knowing what your treatment options is helpful and provides some hope, whether you choose to pursue them or not. Being aware of what lifestyle factors make your vitiligo either better or worse may also enable you to manage the condition better.

Take back control of your life

Spending time doing the things you love, for the people you love is surely what quality of life is all about, right?One of the most therapeutic and empowering things you can do, is ask yourself what things do you really appreciate and make sure you do more of those things that make you happy.Life is about running marathons, playing the trumpet, writing poetry, raising kids, baking bread, climbing mountains, starting your own business, rescuing animals, singing in the shower, etc. It’s about putting your whole self into everything you commit to.The person you are and the life you live is defined by what makes you happy and fulfilled and by what you contribute to others. It is certainly not defined by the uniformity (or otherwise) of your skin pigment.

…and lastly….

The notion that vitiligo is a purely cosmetic condition is outdated and completely untrue. So don’t let anyone minimise its impact or tell you how you should feel. Your feelings are your own. Some people take their white spots in their stride and even embrace them as uniquely beautiful. Others find having them more challenging. There is no right or wrong response, but there are some constructive approaches that can help you feel happier and enrich your life in ways that go beyond your skin.

After all, if we value our mental health and quality of life, choosing to cultivate positive ways of dealing with negative feelings just makes sense and it really can be done. I’m not saying that we can wave a magic wand and make everything alright, but I do believe it is possible, with practice, to change our perspective to a much happier one and restore our self-esteem. I believe it is even possible to find the silver lining in our own particular vitiligo cloud.

Of course, vitiligo is not a lifestyle choice. If I could have chosen not to have it, I would. But I also know that I would have missed out on a lot that has enriched my life and those things are so precious to me today that I cannot honestly say I completely regret my mutinous melanin (as I now prefer to think of it).

Fighting my own psychological battles has made me a stronger and kinder person. It has given me a greater compassion for others who are struggling with their own demons, whatever those may be and the experiences and insights that living with vitiligo has given me have created a deeper appreciation of what really matters to me.

I sincerely hope that, wherever you are on your vitiligo journey, you will increasingly notice ways that your experience has enriched you and those you have been into contact with. After all, the things that make a person truly happy, beautiful and self-confident are, like vitiligo itself, so much more than skin deep. They are kindness, humour, creativity, sincerity, individuality: qualities that eclipse our skin altogether. These are the qualities that shine directly from our soul, giving us a sense of fulfilment and adding value to the world around us…..

Links to resources I found useful:

https://www.researchgate.net/publication/322332405_Vitiligo_Patient_stories_self-esteem_and_the_psychological_burden_of_disease

http://www.skinsupport.org.uk/content/psychodermatology

Main photo posed by model and not the author.

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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