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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I thought my career was over after I was diagnosed with vitiligo”

Dale Jon Biermann, who joined The Vitiligo Society as a trustee in 2020, was diagnosed with vitiligo when he was 20 years old. Dale works in the aviation industry as a flight attendant, where your physical appearance is often under strict scrutiny because cabin crew are a reflection of the airline they work for. From being well presented in their uniform to maintaining a good skincare and makeup routine, flight attendants need to be image conscious to ensure they meet the high standards often set by the airline they are working for. Having developed vitiligo whilst working as a flight attendant for a well known airline, Dale believed his career would be severely impacted because of the change in his skin. In this honest interview, he shares his story on how vitiligo changed his life and what it means for him as a flight attendant moving forward…

How and when did you develop vitiligo?

I developed my first small patch, which appeared on my thumb in 2012 whilst I was living in Cape Town, South Africa. I had originally thought the patch had appeared after i’d burnt myself on the oven and the mark turning into a scar. After a few months and rather alarmingly, more patches started to appear so I decided to visit my Doctor to see if it was anything to be concerned about. Whilst speaking with the Doctor, I began to understand that she didn’t know what it was especially as she was flicking through an encyclopaedia for possible answers as to what the patches might be. It was only then that she able to say that it was very likely to be vitiligo. I had never heard of the condition before and as she read the words from the page, my heart started to sink because I began to understand that this was an incurable condition that could develop into something much more than what it already was.

She prescribed me with a steroid cream and suggested I try it for the next few weeks. Unfortunately, the cream didn’t work and as discussed with her, more patches gradually started to appear on my body. A few years later, I visited a dermatologist who examined my skin and re-confirmed it was vitiligo and that I should just learn to live with it. I was devastated to hear that I’d developed an incurable condition.

How was your experience in terms of being diagnosed?

Because I had no idea what was happening to my body, the uncertainty around what it was and the lead up to my diagnoses made it one of the worst experiences I’d been through. I remember coming out of the Doctors office when I initially got my diagnosis and sitting in my car on the phone to my Mum and repeatedly saying “I do not want to look like a cow, if this does not go away, I will kill myself” and I remember, at that time, meaning it. I did not want to accept that I had vitiligo, that I wasn’t going to be cured and that I had to live with a highly visible condition.

I honestly thought that my life was over and that I would not be able to continue my career as a flight attendant because of my skin. I was emotionally distraught. I was angry and frustrated that my body was betraying me and that there was no way of fixing it.

Did you notice any immediate changes when you were diagnosed and did it affect your confidence?

Yes, most definitely. My confidence and self esteem went completely haywire. I have always suffered with low self-esteem and this was just the ‘cherry on top’ to run that right into the ground. For years, I hated showing my hands and always tried to hide them as much as possible. When patches of vitiligo started to appear on my face and neck, it was even more daunting. I was in an absolute state for many years. My family supported me by encouraging me to speak about how my skin made me feel, but this made things worse and would often leave me feeling angry. I struggled to accept this was my fate, especially as I believed it would severely impact my career in the airline industry. I didn’t want to people to start judging me because I was different.

On reflection, the only person that was creating a problem was me. I was the one shying away from people and magnifying what this would mean for me long term. Friends, family and those I was closest to, still saw me as the person I was before vitiligo but I naturally assumed their opinions of me had changed. 

You work in an industry where there is a great deal of emphasis placed on appearance and looking ‘perfect’. Did that concern you?

I was really concerned that having vitiligo would end my career aspirations. Had I had a job that didn’t involve close contact and dealing with the public on a daily basis, then I might not have been so phased about the diagnosis. I was honestly concerned that I would lose my job as well as the ability to do what I do because of my skin. When something like vitiligo suddenly becomes a threat and a potential barrier to life’s choices, it can cause extreme amounts of stress and anxiety, which is exactly what it did for me.

I have heard other stories within my industry from people who have not been able to continue in their job because of their indifference, whether it be medical or a visible difference. It caused me many sleepless nights and made me feel inferior amongst my peers. Despite what I had been through, I was diagnosed during a period of change where skin conditions and visible differences were being celebrated with a view of being normalised. Seeing models with vitiligo and other skin conditions did bring me a small amount of comfort.

I recall one a particular memory that sticks out for me. I went for an interview at a company where I was open about having vitiligo. Subsequently, a few weeks later I was told I didn’t get the job which I felt was down to me disclosing that I had the condition. Nevertheless, I now work for a great company that is accepting of everyone, regardless of a visible difference, as long as it does not inhibit you from completing your daily tasks. The interview experience made me realise that I shouldn’t let anything deter me from aiming high and achieving and that the world is so much more accepting than what I thought it would be, which i’m so thankful for.

How did your colleagues respond to your skin?

Because of how my diagnosis had made me feel, I assumed others would view it negatively as well. I was terrified that I would be seen as an outcast or ‘shunned’ within my working environment and by my colleagues. I went through a phase when my vitiligo spread to my face and neck (I was working in Africa at the time and my skin became very tanned so the vitiligo became much more noticeable) and my colleagues would comment that my skin looked darker, which made me want to hide away. Despite this, my colleagues weren’t phased by my skin and were very supportive. As I became more comfortable, the comments became easier to manage but there were still many moments when it made me feel very alone.

What has been the hardest thing about having vitiligo?

The hardest thing was the conflicting thoughts that ran through my mind and how unfairly I started to treat myself.  I was so depressed and anxious. I look back now and think “Why were you so hard on yourself for something that you couldn’t control and was part of who you are’? I also think about the times when I would withdraw myself from people who cared about me and accepted me for who I was. It really can be a struggle when something is forced upon you so suddenly, that you have no control over.

Also, watching my mother go through it with me was hard. She was so worried about it spreading, if I would be rejected by others and the impact it could have on my life. She constantly sent me information on treatments and cures that she had researched on the Internet or by talking to other people. My family and friends have been my rock and have been so supportive. My friends and I spoke about it once and I told them how it made me feel and that it wasn’t something I wanted to discuss unless I raised it with them. They completely understood, however, most people weren’t privy to the internal struggle that I was faced with daily and so it was difficult for them to ascertain just how much damage my skin had caused to me personally.

How do you feel about vitiligo now?

Things changed for the better when I met and started working with a new colleague. On the second day that we were working together she suddenly grabbed my hand and said “This! I absolutely love this! I wish I had it, it makes you so unique and I love that you stand out from the crowd!” She was obviously referring to my vitiligo and in that moment I thought to myself ‘well, if someone who does not have vitiligo loves it and can see it as a positive then why can’t I?’ And from that moment on, I started to fall in love with my ‘spots’. It was then that I decided that I needed to take charge and embrace my differences to create a better life for myself.

Now, I cannot think of a life without my vitiligo. It is part of everything that I am and stand for. I now have a voice and the confidence to speak out and I believe in myself as a true ambassador. I decided to volunteer for The Vitiligo Society so that I can help other people who have experienced what I have. I am truly passionate about vitiligo and it fills me with pride to know that I too, can spread the word. I find myself wanting people to ask about my skin so that I can raise awareness and inform others about what it is. Even now, all those years on, i’m still thankful to that one person who made the comment and which effectively changed my life. You will be pleased to know that we are really good friends to this day.

What tips would you give to someone who has been recently diagnosed?

It is really hard to take this into account but, for all those dreadful feelings that you might be feeling, try not to let them impact your life in a negative way. My first suggestion would be to open up to those closest to you who you can trust will listen and support you. The more you talk the better you will feel in the long run. Do not let vitiligo stop you from living your day-to-day life and instead try to embrace it like so many others are doing so across the globe. Those around you do not see you as any different; they simply see you as the wonderful person that you are….with or without vitiligo.

My final message; be true to yourself and do not change for something that makes you unique and strong. Flaunt it and be proud!

Vitiligo and Mental Well-being; Food, Mood & Gut

Is my mental well-being affecting my vitiligo?

“You have vitiligo” – those words draw the blood from your face and the floor from beneath you. Wondering where and why it started. Is there a cure? As with many life-changing diagnoses, it can leave you feeling like your world has suddenly fallen into disarray before you start to digest things. Like the motions following grief­ – shock, despair, acceptance – building a relationship with yourself – for what feels familiar in your newfound skin is a process, which surely weaves many emotional states.

It’s certainly been my own personal experience and one I see in the clinic time and time again. Not necessarily in a bad way – but in a different way. Forming a new relationship with a diagnosis, no matter what that might be, takes time and trust. Trust in yourself as well as work towards challenging those self-limiting beliefs. A transitional time that can be bumpy to say the least.

There are many factors leading to autoimmunity. Genes certainly hold 30% of this responsibility, however environment, diet, and stress, preclude to the propagation of many disease states including, but not limited to, vitiligo. Looking back at my experience now as a clinician, I often find when listening to the detail, there’s a moment of realisation which joins the dots – in actual fact, yes, life suddenly changed after vitiligo, however it certainly wasn’t an easy ride prior to that. We know this because as with most disease states, stress certainly is the driver, if not a trigger for autoimmunity[1].

For me, I recall my final year pressures at university twined with grief from losing my gran, which triggered a wave of buried emotions from my earlier childhood memories – losing my father, the person I regarded as my superhero. Learning not to speak about the pain was an easier way to cope, pretending to be strong so I could go visit him in hospital upon his final days, and feeling isolated because very little spoken about grief during that time. All of which built up walls as a coping mechanism over the years which suddenly came crashing down when I faced grief again when granny died. Although, in this instance, the passing of granny could be celebrated as she lived a long and healthy life, my body interpreted this loss as the one I faced at aged 12. Whilst I thought I felt like myself and was relatively healthy, my immune system signalled otherwise. It’s what we now recognise as learnt behaviour from childhood patterns which then become the coping mechanism of running the hamster wheel and distracting ourselves from our emotional state in order to carry on. A narrative, which feels so familiar to many, and a narrative, which will not be unfamiliar to those to come.

Our bodies are a synergy of complex systems communicating with each other in a sophisticated manner, more then we could possibly imagine. It relies on the right resources to function, repair, perform and restore. We can’t cheat its needs or cheat it into believing it’s “fine”. Chemical exchanges and pathways will always outweigh what we tell ourselves. Whilst having optimism and a positive mindset is part of healthy well-being, this differs from denial and telling ourselves we are ok when we also recognise we are not. Suppression of emotion will always be an expression upon our health. When we manage this, we manage to project and perform healthy lifestyle measures to actually live the life we choose, one that is not determined by our diagnosis.

Keeping the mind in mind

The relationship between food, mood and anxiety is gaining more and more attention and for good reason. All physiological processes are vital when optimising cognitive function. The bio-chemicals found in food have a profound effect on several complexes in our body but here I’m focusing on the relationship between the gut-brain axis and its immune modulating effect.

The human body is inhabited by a wide variety of commensal microorganisms collectively called the microbiota. There has been a substantial amount of evidence and funding finally being funneled into the role of nutrition and its relationship with our gut microbiome. The ZOE study is the largest experiment to have taken place following Covid investing in the science behind the power of nutrition for disease prevention and making huge advances in our knowledge. We know the gut microbiome is extremely important for our innate immune system, our body weight, metabolism, and importantly brain health. The findings continue to prove that simply changing our diet has a direct and profound effect on the microbiome, with an incredible ability to change our microbiome in a very short space of time, as short as a few days!

Let’s talk microbes in our gut

There is strong clinical research on not only the correlation of probiotic use in autoimmunity, including vitiligo, but also the positive effects of probiotics upon mental health issues like depression and anxiety. The gut-brain axis can be modulated by whole foods and probiotics. We require not only the macro nutrients from protein, fats and complex carbohydrates but also, importantly, the micronutrients which act as catalyst’s in order for exchanges to take place. Without co-factors, nutrient depletion and insufficient uptake can take effect. Any interference with our hormones and neurotransmitters without the required nutrient intake, can lead to depression and anxiety. Factors certainly are multifactorial, however poor diet has a huge steering factor. Starving our cells of the nutrients needed can deplete productivity in performance and repair.

To geek out a little, the main metabolite in our colon is short-chain fatty acids (SCFAs), produced by bacterial fermentation of dietary fibers and resistant starches – both found in plant-based foods. Its key role is neuro-immunoendocrine regulation. A network of cells signal regulation in order to maintain balance within our body with neurotransmitters, hormones and cytokines. Cytokines are small proteins which are crucial in controlling the growth and activity of other immune system cells and blood cells. When released, inflammation – including neuroinflammation – takes place, affecting anxiety and mental health.[2]

SCFA can be inhibited by the western diet as it lacks fibre. The significance of dietary foods through plant foods is not to be underestimated. The role of SCFA in the regulation of neuro–immunoendocrine function is important and has been compromised by the western diet and modern-day stresses. The western diet is low in fibre and high in protein, unhealthy fats, food additives, sugar, and processed salt – all of which impact the inflammation, especially of the intestinal mucosa, prominent in autoimmunity[3]. If this is disrupted and porous, it compromises the conversion of SCFA which can impact autoimmunity by either switching on predisposed genes to offset the activation of autoimmunity or can drive autoimmune symptoms to consistently remain in a “flare”. Furthermore, neurotransmitter balance is negatively impacted attributing to mental health challenges, obesity, cognitive impairment, anxiety all of which further drive systemic inflammation, including neuroinflammation.[4]

Symptoms of disrupted mucosa membrane can express as (but not limited to): anxiety, depression, allergies, food sensitivities, digestive problems and bowel irregularity, infections, brain fog and immune dysregulation.

Mindful eating for the raw materials to making neurotransmitters

In order for our neurotransmitters to regulate, they need precursor co-factors. We obtain these from a whole food diet.

NeurotransmitterRequired Co-factorsObtained fromDopamine (feel good, pleasure neurotransmitter), adrenaline and noradrenaline (our excitatory, stress hormone)Amino acid – tyrosine or its precursor phenylalanineOrganic eggs, fermented soya, organic poultry, fish and seeds – especially sesame and pumpkin.  Serotonin is a key hormone in stabilising mood, feelings of well-being, and happiness. Allows brain cells and nervous system to communicate with each other aiding with sleeping, eating, and digestion.    Amino acid – tryptophanOrganic eggs, fermented soya, fish, pumpkin, sesame seeds, beans and pulses, game and red meat.    Glutamate, GABA. Glutamate is the major excitatory neurotransmitter in the nervous system. Linked to many other neurotransmitter pathways, including glutamate receptors found throughout the brain and spinal cord neurons.  Glutamine, and methionineComplete protein: Fish Organic eggs Tempeh tofu or natto Combining: beans and wholegrains to form a complete protein – if tolerated.  Acetylcholine – Chief neurotransmitter of the central nervous system. Plays a vital role in motivation, arousal, attention, learning, and memory. Involved in promoting REM sleep.  Choline (An essential component of the neuron membranes)   Lack of choline in the diet has been associated to memory loss, poor skeletal muscle function.Organic egg yolk, fish roe, organic liver and lecithin granules.

Furthermore, we require co-factors in order for enzymes to act as catalysts to then convert raw material into neurotransmitters. The below are key for the gut-brain axis.

[1] Ljudmila Stojanovich,Stress and autoimmunity,Autoimmunity Reviews,Volume 9, Issue 5,2010,Pages A271A276,

[2] Clapp, M., Aurora, N., Herrera, L., Bhatia, M., Wilen, E. and Wakefield, S., 2017. Gut Microbiota’s Effect on Mental Health: The Gut-Brain Axis. Clinics and Practice, 7(4), pp.131-136.

[3] Manzel, A., Muller, D., Hafler, D., Erdman, S., Linker, R. and Kleinewietfeld, M., 2013. Role of “Western Diet” in Inflammatory Autoimmune Diseases. Current Allergy and Asthma Reports, 14(1).

[4] Mu, Q., Kirby, J., Reilly, C. and Luo, X., 2017. Leaky Gut As a Danger Signal for Autoimmune Diseases. Frontiers in Immunology, 8.

Co-factorsFunctionObtained fromB VitaminsPlay a major role in maintaining functioning brain chemistry. Deficiency in B vitamins is common in depression and anxiety.[1]  B vitamins: Green leafy vegetables are the best form of folate. The bioavailable form of B12 is in animal form so it is important for vegans or plant-based individuals to have their blood profile monitored. B12 deficiency contributes to depression as does low folate.  Omega-3 fatty acidsOmega-3 fatty acids form an integral part of neuronal cell membranes and influence a number of essential processes in the central nervous system. A lack of omega 3 fatty acids in implicated in many cognitive and mood disorders.[2] The western diet is high in omega 6 which is pro inflammatory. Whilst we need both omegas 3 and 6, they need to be in ratio. Without these essential fats, cell membranes cannot anchor the receptors, which results in disengaged cell-to-cell communication and inflammation.Oily fish, S.MA.S.H (salmon, mackerel, anchovies, sardines, herring) chia seeds, walnuts, soy beans – if tolerated. Organic eggs, hemp seeds, spinach – although in lower amounts.Vitamin CAs well as being a co-factor in immune and skin health, vitamin C is involved in the regulation and modulation of neurotransmitter biosynthesis as well as supporting the nervous system. Fruits and vegetables, especially yellow peppers, papaya, guava, citrus kiwi, strawberries, broccoli, brussels sprouts, potato, peppers, salad greens.ZincPresent for the conversion of serotonin in both the gut and brain as well as other neurotransmitters. Most abundant mineral in the brain. Low levels have been associated with depression and ADHD.Meat, game, fish, seafood. Nuts, seeds and seaweed.IronCrucial for structure and function of the central nervous system. Responsible in the synthesis and signaling of neurotransmitters dopamine, noradrenalin, adrenaline and 5-hydroxytryptamine (5-HTP), which are involved in emotion, attention, reward, movement.  Lean meat, liver and darker meat. Oily fish, organic eggs. Beans, pulses, dark green leafy vegetables and dried fruit. Iron is better absorbed when consumed with foods rich in vitamin C.CopperIntegral and necessary for brain-specific enzymes that control neurotransmitters.  Soy, oysters, shiitake mushrooms, sesame and sunflower seeds, cashews, brazil nuts and hazelnuts.MagnesiumTouted for its benefits, magnesium is involved in over 300 chemical exchanges in the body including the regulation of neurotransmitters, which send signals throughout the nervous system and brain. Essential in nerve transmission and neuromuscular conduction.    Lightly cooked swiss chard spinach, kale, squash, pumpkin seeds, steamed broccoli, halibut nuts and seeds.CalciumReleases neurotransmitters from the site of the synapse assisting in cell-to-cell communication. If uptake of calcium is low in the brain, it will leach it from the bones, so is vital to keep this within a healthy range.Organic green leafy vegetables, fermented soy, mung beans, almonds, brazil nuts, flaxseed, sesame seeds, chia seeds. Organic dairy milk (if tolerant).

Lifestyle:

The Vagus nerve

Whilst your gut and brain are housed in different parts of the body, they maintain more than just a biological connection. They are actually connected by the Vagus nerve, also known as the “wanderer nerve” – taken from its Latin name. The Vagus nerve penetrates the gut wall, however its key role is to signal between the brain and gut in both directions.

The stimulation of vagal fibres in the gut plays a crucial role in major psychiatric conditions, such as mood and anxiety disorders. In line with this, there is preliminary evidence that gut bacteria from SCFA has a beneficial effect on mood and anxiety, partly by affecting the activity of the Vagus nerve[3]

Since, the vagal tone is correlated with the capacity to regulate stress responses, it can be influenced by breathing, hence it’s tone can be strengthened through vocal activities, meditation and yoga, which contribute to resilience and mitigation of mood and anxiety symptoms.[4]

Stimulate your Vagus nerve by:

SingingGarglingHummingChantingYogaMeditation

Sleep

Sleep is probably the single most health promoting activity one can apply to their life. It promotes repair, reduces inflammation, promotes longevity and regains neuroplasticity – which once was considered impossible. It is the most important factor in supporting our immune system, especially in autoimmunity, chronic conditions and mental health disorders.  We should aim for 7-8 hours of sleep for adults and 9-12 hours for children. [5]

Exercise

Research continues to show exercise reduces inflammation and improves health, including mental health conditions. Excitingly, recent studies show that exercise promotes a diverse community of microbes that contribute to the biodiversity of the bacteria in the gut. Exercise appears to be a potential external influence with the capacity to also support the alteration of the gut microbiome in a positive way. Exercise alterations to the gut microbiome may provide a link to the exercise-related benefits on gastrointestinal (GI) function, mood, and higher cognitive function in the brain centres.[6]

Top 5 foods to avoid

Foods which cause oxidation, consequently speeding up the ageing process:

Blackened and overcooked meats and fish.Trans-hydrogenated and oxidised fats.High intake of intensively farmed meat and dairy foods.All processed foods, especially those labelled with ingredients you can’t pronounce!Sugars including added sugar – fruit juices, alcohol, and wine. Recreational drugs and white starches including white pasta, rice, breads and crackers.

Check in with yourself

Are you stressed?Are you sleeping enough?Are you exercising enough?Are you over-exercising?Are you drinking enough water?Are you eating a whole food diet?Are you sleeping enough?Are you doing things to calm the nervous system down – self-care?Do you have a good support network?Are you consuming fermented foods or probiotics?

[1] Young, L., Pipingas, A., White, D., Gauci, S. and Scholey, A., 2019. A Systematic Review and Meta-Analysis of B Vitamin Supplementation on Depressive Symptoms, Anxiety, and Stress: Effects on Healthy and ‘At-Risk’ Individuals. Nutrients, 11(9), p.2232.

[2] Simopoulos, A., 2002. Omega-3 Fatty Acids in Inflammation and Autoimmune Diseases. Journal of the American College of Nutrition, 21(6), pp.495-505.

[3] Silva, Y., Bernardi, A. and Frozza, R., 2020. The Role of Short-Chain Fatty Acids From Gut Microbiota in Gut-Brain Communication. Frontiers in Endocrinology, 11.

[4] Breit, S., Kupferberg, A., Rogler, G. and Hasler, G., 2018. Vagus Nerve as Modulator of the Brain–Gut Axis in Psychiatric and Inflammatory Disorders. Frontiers in Psychiatry, 9.

[5] Dialogues in Clinical Neuroscience, 2008. Sleep disorders as core symptoms of depression. 10(3), pp.329-336.

[6] Dalton, A., Mermier, C. and Zuhl, M., 2019. Exercise influence on the microbiome–gut–brain axis. Gut Microbes, 10(5), pp.555-568.

[1] Dalton, A., Mermier, C. and Zuhl, M., 2019. Exercise influence on the microbiome–gut–brain axis. Gut Microbes, 10(5), pp.555-568.

News

Vitiligo Live Chat & Virtual Drop In Service Launched

Last year the Vitiligo Society embarked upon a series of initiatives to provide accessible and active support to its community members. We recognised what a challenging and perhaps lonely journey vitiligo can be, and how important a space that enables individuals to connect with one another is. 

After trailing a peer support meeting on the 23rd August 2021 we listened to feedback from our members and volunteers. Following this we applied for funding to help us launch a live chat service and virtual drop in sessions. We were delighted when The National Lottery Community Fund awarded us £8,480 to launch these services in 2022.

These new services will allow us to provide an immediate point of contact to empathise, understand and signpost our community to reliable information.

We believe that this service will allow us to support people early on in their diagnosis, linking them into a community for long-term support and intervening before the psychological effects of living with the skin condition become too difficult.

The above sessions will be open to anyone who has been impacted by vitiligo in some way. Whether you have been living with this condition, in the middle of getting a diagnosis, or a concerned family member.

Dale Biermann, the trustee leading the VitChat initiative, explains more about the service:

This service was started with the intention of being able to be a ‘go to’ for anyone who wants to talk to someone about what they are going through and be able to get through to them immediately. In a world where digital communications are the primary way to communicate, we saw the need to be able to get immediate responses from the Society in order to feel at ease and get direct access to a wealth of information. This is a service that I wish was available when I was going through the emotions of having vitiligo. Remember, you are not alone out there.

Abbie Hurrell, Charity Director for the Society and lead contact for the Virtual Drop In Sessions added:

The virtual drop in sessions compliment our live chat initiative perfectly. Our Society isn’t large enough to host local face-to-fact support meetings, so a drop in session where people from anywhere around the UK can have a chat with others living with vitiligo is the perfect solution. Someone from the Society will always be there to help signpost people to information or answer questions about our work. It’s so important that people have a support network early on their diagnosis so they can get access to reliable information and not feel too isolated by their condition.

You can find out more about both services by visiting: vitiligosociety.org/our-support-services

Please note: the sessions will not be run by trained professionals (doctors/ psychologists), if you have a query that requires support from trained professionals, then email us at: hello@vitiligosociety.org.uk.

Vitiligo bears are on their way!

In April 2021 we received incredible news that the Aviva Community Fund had chosen to support our Vitiligo Bear Project.

Over a 40 day period our crowdfunding campaign attracted 159 pledges, raising an incredible £4,418, smashing our original target! Not only did we help secure the funds we need for the project, we have helped raise awareness of the condition too.

We are now absolutely delighted to announce that the bears are now on their way to us and will soon be available to purchase through our shop! 

What is the bear project?

We know that being diagnosed with vitiligo can be life changing and really tough. For children, it can be even more difficult. Currently there are so few toys out there designed with kids who have vitiligo in mind. 

The project is to design and manufacture a teddy bear that children with vitiligo can identify with. The teddy’s fur will mirror the patches that vitiligo causes in skin.

Why is the bear project important?

Manufacturing this toy and making it available will help to:

normalise the condition for young peopleprovide an educational tool when a child explains their vitiligo at school or to friends and familyoffer comfort to a newly diagnosed child 

The money we raise here will be used for the design and production costs of an initial batch of bears. The bears will be made available via our (soon to be launched) online shop and then money raised from the distribution of these will allow us to make more bears available and help support the work we do.

There has never been anything like this for children with vitiligo.

How did the Aviva Community Fund help?

Aviva gives all it’s employees £25 to pledge to a project – £1,300 of the funds we raised came from these employees. In addition, Aviva gave us the platform on which to crowdfund and mentored us through the process.

What happens next?

Now that the bear designs are on their way to us, we’ll be making them available to purchase as soon as they arrive. All the money produced from the sale of our bears will help us produce the next batch and also support our services, research and mission.

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

Be notified as soon as the bears are available by subscribing to our newsletter.

Update on Incyte’s Ruxolitinib Cream Review

On the 14th March 2022 Incyte announced that the US FDA will not meet the Prescription Drug User Fee Act (PDUFA) action date and has therefore extended the review period for Ruxolitinib cream for the treatment of vitiligo by three months to 18th July 2022.

About Ruxolitinib Cream

Ruxolitinib cream is a cream formulation of a selective Jak1/Jak2 inhibitor, already approved for use in the US for the treatment of atopic dermatitis. 

Since late 2021 we have received promising updates from phase 3 trials for Ruxolitinib cream, for the treatment of patients aged 12 and over with non-segmental vitiligo with facial involvement.

Why a delay?

The FDA extended the review period to allow for time to consider additional data provided by Incyte. This additional data constituted a ‘Major Amendment’ to trial information and as such resulted in this extension to give the FDA additional time to conduct their review. The FDA did not raise any concerns related to the safety or efficacy of Ruxolitinib cream.

What does this mean for people in the UK and around the world?

Incyte released the following statement with the announcement: 

“We are confident in the data from the TRuE-V clinical trial program which supports our sNDA submission for ruxolitinib cream in vitiligo, and we look forward to bringing this innovative topical treatment to patients with vitiligo in the United States for whom there are no approved therapies that address repigmentation,” said Steven Stein M.D., Chief Medical Officer, Incyte.

When we last spoke to the Incyte team in Europe they were expecting to be able to share news about the potential use of Ruxolitinib in the UK with us towards the end of 2022. With the FDA delay announcement, it’s likely this timeline may have shifted a little, but we will share more information as soon as it is shared with us. 

How can I find out more information?

Dr Harris produced a useful summary from the phase 2 trials which shows some of the results that the trials provided patients, click HERE to read his blog

Click HERE to view the full Incyte announcement

We work in partnership with Incyte in Europe, click HERE to subscribe to our newsletter to be kept up to date with more information and announcements, and HERE to donate to support our work.

Vitiligo Society welcomes young ambassadors

It can be difficult for you, as a parent or carer, to talk to your child about vitiligo. This may be cause you have your own feelings about the condition, or because you were not aware of vitiligo and it feels so full of unknowns for you.

As a parent, you will naturally want to get the best treatment for your child and try every medical option open. However, you need to be aware that your efforts to find a treatment may be misunderstood by your child. It is possible that they may think that this means you are ashamed of their condition and this can cause further difficulties if treatments prove not to be as effective as you had both hoped.

Whether you are treating your child’s vitiligo or not, we believe in the power of children seeing peers with vitiligo being able to thrive and embrace their unique appearance. Our Society is really fortunate to now introduce a team of incredible young ambassadors who are unafraid to show their spots, speak out about their vitiligo, and share words of encourage for other kids to feel proud to do the same!

Meet Nikayah, she’s 9 years old and very happy with her unique skin…

“‘You are beautiful!’ Is what most people say to me when they see my light patches. My name is Nikayah and I am 9yrs old. My mum noticed my first light patch when I was 2 yrs old. She didn’t think much of it until more appeared 2yrs later. Some of my light patches are in my hair which makes my hair turn grey! How cool is that!

My light patches are a constant reminder that we are all beautiful and unique. By talking about Vitiligo we can spread awareness and promote a positive self image for us all. I am so happy in the skin that I am in… Even though some have disappeared or become smaller, I want them all of my light patches to come back.  I never want my light patches to go!”

Follow Nikayah’s journey on Instagram: @his_workofart

Meet Charlie, he’s 9 years old and enjoys drawing, swimming and football…

“I was about 4 years old when I noticed a small white patch on my chin. Then it spread and a new spot appeared on my neck. At the beginning, I wanted it to go away. I didn’t think it suited me and I just wanted my normal skin back.

Now I’ve had vitiligo for a few years, I think it makes me feel special. It is part of who I am and it makes feel important. I think it’s important to teach others about vitiligo so that people don’t make fun of them and so people don’t feel embarrassed about having vitiligo. I feel really happy and positive about my skin now. Don’t be afraid to show your patches. People might have questions about your patches and you can explain what it is and be proud!”

Meet Darnay, he is 10 years old and enjoys tennis, gaming and looking after his little sister…

“I developed vitiligo at the age of 7 and I’ve never been ashamed of my patches.

I think that my patches are really cool and resemble a superhero mask. People stare all the time, but it doesn’t bother me at all and it just gives me extra strength.

I say vitiligo shouldn’t change the way you are, it should give you more confidence. I think my vitiligo makes me unique.

Wear your parches with pride. Look in the mirror everyday and tell yourself you are beautiful. Hold your head up high. If people stare, let them stare. They are just fascinated with your uniqueness.”

Follow Darney’s journey on Instagram: @darns2012

Meet Lizzy, she’s 7 years old and was diagnosed wih vitiligo when she was 5…

“I would tell kids who get diagnosed with vitiligo not to be scared or worried. I told my friends that I have vitiligo and explained what it was just in case the saw one of my spots and worried about me.

I told them that vitiligo is on contagious and doesn’t hurt me at all.

I love the kids I’ve met through the Vitiligo Society. Vitiligo has helped me make new friends all over the world!”

If you are a parent with any questions or concerns about your child’s vitiligo then please email our team parentsupport@vitiligosociety.org.uk

Mental Health and Skin Conditions Report to be debated in Parliament

What is the Report?

In 2020 the All Party Parliamentary Group on Skin published findings from its latest Inquiry into mental health and skin disease. An inquiry that The Vitiligo Society was involved in shaping on behalf of the UK vitiligo community.

More than a dozen leading doctors, specialising in dermatology and mental health led the report, as well as patient organisations, and the dermatology specialist groups, the British Association of Dermatologists, the Primary Care Dermatology Society, and the British Dermatological Nursing Group.

The aim of the report was to gain insight into the state of mental health services available to patients with skin conditions in the UK and the psychological impact of these conditions. It is divided into chapters that aim to cover every aspect of mental health and skin disease, ranging from the design and commissioning of services to healthcare professional training, research priorities and patient advocacy.

When will the debate take place?

Sir Edward Leigh in his capacity as Chair of the APPGS now been successful in his application for a Westminster Hall debate on the APPGS report on Mental Health and Skin Conditions published in 2020.

This will take place next Tuesday 25th January at 4:30 pm and continue to 5:30 pm so there will be space for other speakers and of course the Minister’s response.

How can I watch the debate?

The debate is only open to MPS and visits to the House are currently suspended but it will be available to be watched on Parliament TV  https://www.parliamentlive.tv/

Why is this important for people living with vitiligo?

It’s hugely positive for dermatology issues such as this to be discussed in Parliament, and we can hope that it raises awareness amongst leaders of the importance of mental health support for people living with visible skin conditions, and well as highlight the need for investment in research.

If you need a copy of the APPGS report, you can find that on the APPGS website  APPGS – The All Party Parliamentary Group on Skin

Fundraiser runs 33 marathons in 2022 to support The Vitiligo Society and Diabetes UK

Harry, 33 from London is running an incredible 33 marathons this year to raise money to support The Vitiligo Society and Diabetes UK

The Vitiligo Society, like many charities, relies on the public for it’s support. Fundraising volunteers, along with our members, are what enable the Society to support community & research, educate and raise awareness about vitiligo.

Harry shared with us why he had chosen to undertake such a huge challenge:

2022 will be 30 years since I was diagnosed with Type 1 diabetes and 3 years since I was diagnosed with vitiligo. To commemorate the milestone, I’ve taken up the challenge to raise money for Diabetes UK and The Vitiligo Society by running 33 Marathons throughout the year (that’s 2 to 3 marathons a month!)

Both charities are fantastic in educating the public and supporting people like myself in managing and living with the condition. My aim is to raise equal amount of funds between both charities by my last run on 31st Dec 2022.

You can help support Harry by donating to his fundraising page: www.justgiving.com/fundraising/3322vitiligo and follow his story on his instagram page: instagram.com/33marathons2022.

Find out more about fundraising for our Society by visiting our Fundraising Page

Can you complete the 500km challenge?

Are you looking for a challenge in 2022?

The Vitiligo Society have teamed up with Virtual UK Runner to bring an incredible 500km challenge to help support the vitiligo community. The Society is calling for people to walk, hop, skip, swim, cycle or run 500km in 12 months. It’s a brilliant way to get fit, enjoy some fresh air, and help support our work!

How to sign up

Virtual Runner UK have allocated The Vitiligo Society 300 places for this race. Entry is £14 and includes a free participation medal.

You can register through the Virtual Runner UK website by following the link below. Registration is really easy and takes less that 5 minutes.

Sign up at Virtual Runner UK

How virtual running works

Virtual running works exactly the same as any other type of running but the difference is that the entered race can be run at any location, at any pace, inside on a treadmill or outside in another country! All you have to do is enter a race and provide evidence that you have done it. That’s it!
Virtual races are a great way to stay fit and active all year round, run for a good cause and get awesome medals for your participation!Virtual Runner UK will help you track your progress and see how all the other Society runners are getting on!

How to raise extra money through sponsorship

You can find us on the JustGiving website and set yourself up a fundraiser profile there – just click on the link below. Alternatively, you can contact us to request one of our fundraising guides or for information on how to raise sponsorship offline.

Find us on JustGiving

If you have any questions then please email us: fundraising@vitiligosociety.org.uk

Finally, don’t forget to share your snaps and tell us what you think of the challenge!

Society helps publishers create children’s books to promote inclusivity and awareness of vitiligo

You may remember our work earlier in the year in supporting a Kickstarter project, a new book ‘Ready of an Adventure’ which featured a character with vitiligo. Our Parent Support Network helped shape and offer feedback on illustrations to ensure that vitiligo was accurately represented. We then featured the book and it’s fundraising campaign in one of our VitLife articles, which you can read HERE.

Following this we were also contacted by Puffin books, who were looking for similar input and feedback to ensure that the representation of vitiligo in their upcoming book ‘We’re Going to Find a Monster!’ felt as authentic and relatable as possible.

Supporting the book’s development

Our wonderful Parent Support Network again volunteered to be testers of this new book – with the help of their incredible and enthusiastic children! The network read through drafts and helped flag any feedback or concerns they had with the way vitiligo was portrayed in the book. They also gave general feedback on the book and how their children felt whilst reading and seeing the illustrations of a hero with vitiligo.

One PSN volunteer noted:

My kids enjoyed it, we loved that it’s not specifically about vitiligo. I personally would love to see more stories with characters having vitiligo. Having this opportunity to review and help shape books that my children will enjoy is wonderful.

Helping to support our cause

Following the feedback on the story and illustrations Penguin books were really keen to help raise awareness of vitiligo and to support our work. This resulted not only in a mention of our Society and information on vitiligo in the book’s cover, but also in the publishers making a small donation to our Society to help support our work.

The publishers commented:

We hope you and all the readers enjoy the book, and that it feels refreshing and positive to have a character with vitiligo unselfconsciously front and centre in a fun picture book. 

Creating awareness and understanding

Books like this are so important in helping children feel represented in literature and grow up feeling confident and proud of their visible difference. It also helps introduce their peers and other parents to vitiligo in a positive way, creating an opportunity for more people to become aware of the condition.

Since the book’s launch we have had a number of parents reach out to us looking for support. It’s been wonderful to be able to signpost them to our Parent Support Network and offer a supportive community to people who were feeling anxious or concerned for their child.

You can purchase ‘We’re Going to Find a Monster!’ by Malorie Blackman from Amazon, and most UK bookstores.

New vitiligo clothing range helps our community create awareness and feel proud of their skin

In August 2021 our VitLife editor Natalie shared the news of our online shop launch with our community, 

The Vitiligo Society are delighted to announce the launch of their new online shop selling a range of branded merchandise for those with vitiligo.

The shop, which has been a key focus since January this year, has been one of our critical objectives for the Society and forms part of our strategy to raise awareness and represent the global community.

The range, which is personally and exclusively branded, is the first of its type for the Society. Each item was carefully selected and crafted with the community in mind as we wanted everyone with vitiligo to feel empowered, represented and proud of who they are.

Read the full article HERE.

Our impact so far

Since it’s launch 3 months ago we have been really delighted by the support our shop has received, generating over £1,100 in sales already. 

The feedback on the quality of the products has been extremely positive too, as we wanted to ensure that our suppliers were responsibly sourced but also that the items received were comfortable and long-lasting.

Why not get creative and join the team?

The shop is completely run by volunteers, and whilst we’re off to a great start there is more work to be done!

Over the next few months we’ll be looking at how we can introduce new designs and products to our range and we would love for our community to become more involved in this. Please get in touch with us if you have any experience in design, or if you would like to be a part of the initiative. Email shop@vitiligosociety.org.uk for more information.

Vitiligo bear goes into production!

In April 2021 we received incredible news that the Aviva Community Fund had chosen to support our Vitiligo Bear Project.

Over a 40 day period our crowdfunding campaign attracted 159 pledges, raising an incredible £4,418, smashing our original target! Not only did we help secure the funds we need for the project, we have helped raise awareness of the condition too.

We are now absolutely delighted to announce that the bears have been designed and are ready to go into production! 

What is the bear project?

We know that being diagnosed with vitiligo can be life changing and really tough. For children, it can be even more difficult. Currently there are so few toys out there designed with kids who have vitiligo in mind. 

The project is to design and manufacture a teddy bear that children with vitiligo can identify with. The teddy’s fur will mirror the patches that vitiligo causes in skin.

Why is the bear project important?

Manufacturing this toy and making it available will help to:

normalise the condition for young peopleprovide an educational tool when a child explains their vitiligo at school or to friends and familyoffer comfort to a newly diagnosed child 

The money we raise here will be used for the design and production costs of an initial batch of bears. The bears will be made available via our (soon to be launched) online shop and then money raised from the distribution of these will allow us to make more bears available and help support the work we do.

There has never been anything like this for children with vitiligo.

How did the Aviva Community Fund help?

Aviva gives all it’s employees £25 to pledge to a project – £1,300 of the funds we raised came from these employees. In addition, Aviva gave us the platform on which to crowdfund and mentored us through the process.

What happens next?

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

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