fbpx
Share this article →

Our impact

With your support, we:

Previous Next

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

Four Ways to Make an Impact

Whether you have vitiligo, know someone who has it, or are a skin-positive advocate, there are multiple ways you can positively impact the vitiligo community. Some of the most impactful ways I’ve discovered for having a positive impact include educating others, joining a support group, telling your story, and collaborating with local medical professionals.

Educate Others: learn about the diagnosis from a medical professional, personal perspective or both

Being diagnosed with vitiligo or any medical condition can be scary and overwhelming. That is why learning about your condition is so important. Often, when our doctors diagnose us, details can sometimes be missed and we leave their office with a mixture of emotions. Depending on the person this can inflate any concerns they had before seeing their doctors, meaning this can sometimes lead to stress and anxiety. I know when I was first diagnosed, I was incredibly overwhelmed. Thoughts of distress were flooding my mind and even more so once I started researching the condition myself.

So why am I telling you to research you ask? I’ll tell you why. It’s critically important that you arm yourself with the correct information about your diagnosis. What does it mean to have vitiligo? Is it life-threatening? How do I function in the sun? Is it curable? What are my treatment options? The list can go on and while Google search can be overwhelming because of all the information that is available, there are many ways to help balance this while arming yourself with the information you need. One of the best ways to do this is by learning about vitiligo from those who share your condition.

Join a Support Group: build community by 1) joining a local support group, 2) following those who raise awareness on social media, and/or 3) reaching out to others who share your condition:

I cannot stress enough the importance of this step. No Google search, no doctor, nor any Harvard Scholar will be able to teach you about your condition the way others who share it can; unless of course, they also have vitiligo. Humans are designed to share life experiences with others, yet we often choose to compartmentalize our emotions and thoughts, which in turn amplifies that inner struggle of feeling alone. That is why building a community or being part of one is so important.

Support groups and social media platforms are a great way to gain instant access to the vitiligo community. When I was first diagnosed, I experienced a series of ups and downs and I didn’t understand why this was happening to me. I was concerned and embarrassed.  But one thing I did, that was truly groundbreaking for me, was to redirect my emotions. Rather than spiral into a web of worry, I decided to learn about my fellow vitiligo beauties. I learned so much about the people who share my condition, but I also confirmed that not everything I read on Google (claimed to be medical facts) to be true.

When you join a support group and/or start interacting with others on social media you learn a lot. They teach you about their experiences and they help cancel out vitiligo myths. They also help you discover what’s going on with your body, and they help you to see the beauty in your skin. Being a part of this community also enables you to push your boundaries because everyone in the group has the same goal. I remember having a conversation with my friend about this during my early days of diagnosis. I told her the people in the community are the sweetest people you’ve ever met, and she replied, “It’s because they understand”. For these reasons and more, I believe this step plays a critical role in our journey toward acceptance. For me, understanding how vitiligo medically affects my body, but also how others in the community have dealt with it/learned to grow despite it, has enabled me to move forward with this new stage of my life and thrive. However, I recognise this method isn’t for everyone. Not everyone feels comfortable discussing how they feel and what they are going through and that is perfectly fine.

Tell Your Story: telling your story will inspire others to 1) tell their story, 2) encourage them to focus on their own self acceptance, 3) propel awareness further:

Telling your story can be very freeing and healing. You never truly know what someone is going through until you have gone through it yourself and often, we feel alone, until we know we are not. That is why I believe telling your story is so important. When you tell your story, you are raising awareness. Raising awareness is more than just telling your story to the people who share your condition. Raising awareness can help others understand what their friends, family, and people in the world struggle with. It gives people a bird’s eye view that expands beyond what a general practitioner or a simple Google search may teach you, and while everyone’s experience is unique, we also share many similarities because we come from the same tribe. We are the 1% and we are beautiful.

Telling your story can also help propel awareness further. To this day, there are still myths and taboos attached to vitiligo. Raising awareness helps stop this pattern. It helps us to understand our bodies, our minds, and the condition(s) we face so we can tackle it head-on and advocate for ourselves. This is important because once you know what it is (whatever that thing is that is affecting your life), you can process it and create a situation to heal. Raising awareness, therefore, fosters an environment for healing and discovery. But of course, some people may prefer to remain private about their diagnosis until they have had more time to process all the details. They may choose to be silent until they have reached a place where they can be more open, and we should respect that.

Collaborate with local medical professionals: find medical professionals in your area that are right for you, your friends, or loved ones:

While I love and respect medical professionals, I have also had my fair share of bad experiences including misdiagnosis and being strongly advised to take part in treatment trails. I have also encountered many doctors who did not take the time to teach me about my condition. They had a certain way of treating what they believed was the best route, and they disregarded my concerns and treated me differently when I wanted to approach my health holistically. As someone who has vitiligo, but also thyroid disease, endometriosis, and other inflammatory conditions, my experience has taught me that finding the right doctor is not only an extremely important step, but it can also be a difficult task to achieve. However, there is hope. There are good doctors out there and we can leverage the relationships we have made in the communities we have joined for recommendations for doctors and specialists who will address our needs and work with us despite the treatment route we choose (traditional, holistic, or no treatment at all). Vitiligo is not a life-threatening condition, so choosing to treat your spots and patches is purely an individual’s choice to make. I choose to not treat mine, but I also respect a person’s right to choose.

This blog was inspired by my personal journey navigating through being diagnosed with vitiligo and endometriosis. I believe these four methods can be used both as a navigational tool for the newly diagnosed but can also help those who do not share this condition to support the ones in their life who do. Whether you apply these steps one by one or all together, you will have a positive impact that helps the next generation of people in our tribe, as well as those who know, love, and support us.

Not So Natural Progression – My Vitiligo Story

When you have vitiligo (the white patchy skin – think 101 Dalmatians) it seems like you have an intensified ageing condition that steals your youth and robs you of your prime years. What happens when you are unlucky number 1 out of 100, the one percentile of humanity to be running around with vitiligo? Well, the nuts and bolts of it are that your body destroys melanocytes (this is your natural tanning mechanism/cells) causing skin to depigment. In other words, your body incorrectly identifies melanin as invaders (anti-bodies) and sends out the troops to shoot them down, leaving white patches in the various war zones. The patches generally begin developing in areas of high abrasion ie knees, elbows, hands, face etc. The blemishes stay that way or worsen with no real chance of remission and to date there is no proper cure for the disease. However, don’t go getting all excited as it’s not contagious and not something to be concerned about if you’re not symptomatic (patchy).

So, your body’s own army is staging what seems like a full-scale coup. Now being a Vitiligo Veteran having earned my patches, you notice your hair turning not grey but white like the purest, reflective snow. Ageing on a normal scale introduces a bit of grey on the sides or a dash of “salt n’ pepper” to add a little “debonair” to the profile-pic. Instead, it’s the hair you’d rather not have change; eye lashes, eyebrows, facial hair and you guessed it bodily hair,  and it’s not a polite take over either, its hostile like patches of sinking quick-sand falling through the earth.

Literally overnight whilst you are sleeping your outward appearance can transform, it’s like when you attend an annual family reunion, big noticeable changes have occurred in your relatives physicality which forms the basis for the year aheads family backend discussions “has he shaved that thing off yet?”. This brings about a fearful daily inspection ritual. Your mirror becomes the enemy of your morning, instead of checking your social media as you open your eyes, you find yourself flipping your camera direction on your smartphone to see if the moonlight somehow untanned your patches bigger whilst you were dreaming of being able to enjoy perfect blue sky and a bikini-ready pool day.

For most of us that suffer with vitiligo you will concede that the patches we are gifted with are often not what we had hoped for, you wish they could at least have revealed themselves in a more complimentary fashion. I had the Panda patches, white circles around my eyes and mouth during my high school years. High school’s already, Everest, K2 – bells and whistles summit – challenging enough with mere pimples to contend with!

Try wearing the Panda suit at first break in mid-summer African sunshine with a 1000+ kids trying to figure you out.

My Gran on my Dads’ side and two of my Great Aunts on my Moms’ side all have/had vitiligo. Anywhere between 20 – 30% of Vitiligo sufferers have hereditary links. At age seven when we threw in the towel and stopped explaining away my growing milk stains. I was officially diagnosed with vitiligo when I was 7 years old and although not life threatening, this condition has far reaching psychological effects which do indeed threaten ones’ life in many ways you wouldn’t dare imagine. Being visually different creates a psychosis of always feeling like you are on the outside looking in, never part of the click for real. Although I will mention, in my case this was because I was always observing, so I learned to find the level which has proven to be a valuable chameleonesque life skill to possess. One might argue this, by concluding that, as a result you don’t really focus inwardly developing your own personality and identity first and foremost –  and they would be right!

Bearing witness to my older family members advanced vitiligo covered skin as a child, struck me as unsightly, so when the penny dropped, I was under no false illusions of what my future would behold. I was overwhelmingly destroyed and my life had only just begun. Having known how it ends before it begins sets you up with an expectation or lack of hope that can’t be reversed. Sort of like when you light the wrong end of a cigarette. My introduction was however unavoidable and clearly the way it was all meant to roll out.   

My poor Mom – I look back at everything she did for me, her limitless patience and resilience with everything, she walked the road right next to me the whole way, I actually now view her in a saintly light (cue angels descending from above!). She most definitely saved my life over and over again, constantly talking me away from the edge, pursuing the next treatment, always giving me hope and lifting my spirits to fight another day. It’s very easy to give up, to allow the despair to take over. I have travelled a bit and I’ve seen people with vitiligo reduced to lying face down on the cold hard floor, body contorted and now just another dirt covered bump on the street with an empty can next to their heads, begging & hoping for just enough to survive one day longer outcasted by their uninformed communities.

I tried every treatment available through the years that were within reach. I participated in one or two noteworthy experiments I will share with you to illustrate my determination in my pursuit of just normality really. Not sure what the treatments official name was but let’s call it, getting a hell of a tan. I had to apply a liquid serum at home to affected areas which heightened my skins photosensitivity. I would then hide under a big towel in the car ride over to avoid overexposure and into the clinic like I was hiding from the Paparazzi. After confronting confused onlookers in the waiting area, they put me in a glass tanning booth which buzzed with blue light like you would imagine a time machine set in a 90’s film which supposedly filtered the good UV rays necessary for the healing. Needless to say the levels of exposure, were runaway horse difficult to control and I landed up each time with white pain, engorged, watery blisters everywhere which would unexpectedly pop and drain out at perfect moments, like when you’re standing in front of your entire classroom delivering a speech with oozing blisters on your face. The other treatments weren’t much different unfortunately. I elected to miss out on a gap year in Vermont USA (which we had prepaid for my place) after graduating high school to test a new “cutting edge” laser treatment which burned me in all too familiar ways, but with a far more acute instrument. I endeared it this time for a much longer period to make sure I got the most of it. Six months of probono blisters was not really the fancy-free working holiday gap year I had anticipated but at least it didn’t cost my folks the 750k worth of medical fees they would normally charge for the treament. Not even a freckle to show for it! Anyway after my last session where they tried to remedy the blemishes of my unmentionables with a laser gun, I decided to call it a day with my search for the cure. I finally after fourteen years gave up and decided to live with it.

Heightened stress is said to accelerate vitiligo. Well in my case around my mid-twenties like a wind-swept forest fire my vitiligo reached 100% coverage. Needless to say I was feeling anxious and basically stressed all my skin completely white; no melanin, no patches, just baron scorched earth. This unknowingly became a good thing.

I discovered self-tan.

My new journey of trial and error was about to begin. So far, I had done everything to cover up my blemished body and traumatised mind and soul. I wore long clothes and pasted on thick sunblock in the intense African heat to avoid tanning and therefore try and minimise the contrasting skin colours for an entire decade long, it was a little uncomfortable to put it mildly. What made it possible at all was that my old friend Teza, without ever saying a single word about it, did the same, he jumped on the bandwagon and wore long clothes for the duration alongside me – an absolute display of friendship and kindness you could ever imagine possible – legend mate! Beyond that I grew awkward unfashionable hairstyles and beards and adopted a nonchalant grungy bad-boy demure with a sleeping violent dragon undertone to ward off any enquiry.

Self-tan had a tone of promise about it. I felt I could master what is an artful skill, orange streaks, dark knees and elbows, glistening caked hues accumulated in the hairlines, finger nails and hands like I was scratching through a lorry full of MSG coated maize snacks, quite frankly it was just like having vitiligo all over again but in a different self-inflicted way, this time. However, I was no stranger to the uphill battle and I persevered and to my eventual advantage, self-tanners developed and became really very good! I managed to steal back a semblance of normality, people mostly didn’t even know that I’m literally a “white albino in a sense”. Self-tan allowed me to walk tall amongst the herd.

I enjoyed a great couple of years with only occasional ridicule when someone would notice I was wearing self-tan. Time whizzed by as I grabbed back at the spoils of the everyday existence and then almost by magic, my beard turned white in what seemed like an over-night lightning storm. This is the sudden frustrating and unpredictable process with this thing!!! which if im going to be fair is exascerbated by denial – “it isn’t, it isn’t, it isn’t oh it is and it’s so so noticeable”. I had a brand- new hurdle to overcome now. So, I attempted to hide my white – at 30 years old beard.

I suppose this is the gig right!

Until one day a good friend of mine Frank motivated me enough to grow it out, “grow out the beard” he said, “it would be cool and beards are very in vogue”  white walkers were trending on “Game Of Thrones” so I did it and it was a little bit of a life changing decision which genuinely got me out of my own skin! I was received at first by those who knew me with amazement and shock, then after the excitement was over the view was “actually that suits you Sir”, people genuinely loved it! It was such a unique look that it gave me something special. People couldn’t believe it was natural and still ask me if I dye either my hair or my beard, which I don’t – really, I don’t keep a beard groomer in my basement for daily root touch-ups! At first, I would try avoid that question emphatically until I couldn’t avoid it anymore and I faced up to the question and became unphased to address it comfortably in large groups of people! The more confident I was the more they bought in to my so- called new brand of sorts.

This question opened an important door for me and gave me the opportunity to explain myself, what my condition is all about and unapologetically give people a little insight into the unknown. Curiosity could be rationalised, and they responded with interest and tolerance, contrary to what I had always imagined. I no longer had to feel ashamed of my vitiligo, I now wear it confidently and proudly with a little grin which sits nestled in amongst the whitest beard you have ever seen.

Most of my life was spent on the run from myself, I look back and realize that the shame could have been avoided thinking the way I do now (clarity – the only true gift of ageing, oh! and also giving less of a ….). The media has highlighted vitiligo today where even fashion models now adorn the catwalk on full display with their beautiful patch-work kissed pelts in the flashing glitz. Guess what? recently I joined those ranks and featured in a couture shoot myself, a really cool brand designed with real freedom in mind. For someone like me it is the biggest gesture of throwing myself out there into the darkness or in my case “the sunlight” and going for it. To overcome my inner most fear and let the world really see me.

I have against all odds managed to create a beautiful life for myself, most unbelievably and importantly I have found the truest love, my supporting wife and our two beautiful children that are my everything.

I have succeeded at the life thing and you can do the same, if you just let go, be your authentic self, people will love and respond to you for who you are. Michael Jackson had vitiligo oh yes, my friends he wore gloves and made it iconic but actually was covering up, he used a procedure to accelerate his whitening and the facial surgery to accommodate his lighter complexion and we all thought he was a weirdo and maybe us thinking he was a weirdo made him into one? When your’e hiding, people know it and they feel it and it creates distrust and they will never be able to love or respect you without your honesty unless you love and respect you first.

I detained my body and my own mind living in doubt, limiting my own chances, fighting for my own limitations. I look back and I wish I handled things differently, but I do appreciate my own struggle because it molded my character which is mine and mine alone. I never would have dreamt I would ever jump into a cozie and hit the beach or be confident enough to model in a fashion shoot at 40 years old and be living my life shoulder to shoulder not on the outside looking in. I did this with a lifetime of barriers and boundaries behind me and a stigma that should have left me begging on the floor.

Wear your skin proud it’s only an accessory, our beauty is in our spirit!  

Pandas’ are now my spirit animal!

You can follow Shahn on Facebook: https://www.facebook.com/shahn.mott/

Photographer Credit: Chris Love

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

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

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

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

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

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

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

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

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

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

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

Author: Jonathan Batchelor

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

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

News

World Vitiligo Day 2021 – Global Events Calendar

What is World Vitiligo Day?

Now in it’s 11th year, the idea of World Vitiligo Day was first proposed by Ogo Maduewesi, a fellow Vitiligan and the founder of the Vitiligo Support and Awareness Foundation (VITSAF) in Nigeria.

In 2011, after the idea was spoken about, a small group of activists came together on June 25th to host a Vitiligo Purple Fun Day.

Yan Valle, CEO of the Vitiligo Research Foundation in New York, saw this as an opportunity to create something bigger and wanted a day dedicated to vitiligo awareness and with some work on his part, World Vitiligo Day was born and has since become the most significant event in the calendar for those with the condition. 

Here we bring you a roundup of all the events on offer this month:

UK: The Vitiligo Society

Thursday 24th June, 7pm: IG Live with Natalie Ambersley, Sheetal Surti and Alicia Roufs

Vitiligo Society trustee Natalie will be hosting an IG Live with Sheetal Surti, who recently gave a moving interview on BBC Radio 4 on how her changing skin had impacted the way she felt about who she was, along with Alicia Roufs from VITFriends, a Minnesota based support group that actively raises awareness of vitiligo globally.

Friday 25th June, 12 midday: IG Live with Natalie Ambersley & Sonya Danita Charles

Natalie will be back and this time interviewing model, influencer and body positive activist, Sonya Danita Charles who is known for her collaborations with notable brands such as Levis, Maybelline, Dove and Mac and also, her personal story which has appeared in magazines such as Marie Claire, Cosmopolitan, Women’s Weekly and L’Officiel. 

Joining an IG Live: You can join the IG Lives by accessing our Instagram page: instagram/vitiligosociety . Once on our page, the profile photo will change to live once the live has started. Select the picture when you see this. 
We will also share the recording on our YouTube page and there will also be a recording saved on our Instagram page for anyone who might miss it. 

UK: Vitiligo Song Launch with Little Strings & Charlie Frances

Join Little Strings and Charlie Frances for the 15 minutes before Vitiligo Song officially launches on Bandcamp for the world to hear on World Vitiligo Day!

They’ll be talking about the songwriting process; collaborating virtually and receiving audio submissions from so many wonderful people, telling their stories of having this condition. Charlie and Clare (Little Strings) are two songwriters in the UK with vitiligo who will share how writing this song has affected their viewpoints of vitiligo and songwriting.

They’ll be updating their event page with the link to download the song! All proceeds from the song are going towards the Vitiligo Society. The event is host here on Facebook Live.

World Vitiligo Day Virtual Headquarters

Wednesday 2nd June – Saturday 26th June: Various Celebrations

The World Vitiligo Day virtual headquarters are set in Jakarta, Indonesia this year. The honorary President is Dr. Srie Prihianti Gondokaryono, supported by a strong team from the Indonesian Society of Dermatology & Venereology. 

During the entire month of June, the WVD headquarters will hold 45-minute Instagram Live sessions (@perdoski.id) once a week, on Wednesday nights at 4pm.  

June 2 : Vitiligo in children June 9:  Vitiligo managementJune 16: Quality of Life of vitiligo patientsJune 23: Research UpdateJune 25: World Vitiligo Day (up to 3 hrs) USA: The Global Vitiligo Foundation and MyVitiligoTeams

Saturday 26th June, 6pm: Virtual WVD Celebration

MyVitiligoTeam and the Global Vitiligo Foundation have an incredible line up of activities and speakers including: FDA Meeting Update, Doctor Panel Q&A, Clinical Trial Overview, Arts of Vitiligo and Post Event Social. Speakers include Dr John E Harris, Dr Richard Huggins, registered dietition Jake Webber and Alicia Roufs founder of Minnesota VITFriends.

The event is free, click HERE for more information and event registration.

South Africa: The Vitiligo Society of South Africa

Saturday 26th June, 5.30pm: Live webinar with global speakers

The Vitiligo Society of South Africa are hosting a virtual World Vitiligo Day celebration involving speakers from across the globe (full programme to be announced). Email hello@allmedicalmedia.com for more information.

France: Association of Francaise du Vitiligo

Wednesday 2nd June – Saturday 26th June: Vitiligo Tour du France

From June 2 to 26, 2021, the French Vitiligo Association will travel across France in order to: Recognise vitiligo as a real disease and improve medical and institutions care; eliminate the burden of vitiligo and improve the quality of life of the people suffering from it; raise public awareness and bring a new perspective to vitiligo & meet and collaborate with doctors and researchers to find new therapies.
 
In each town, there will be organised: Corrective make-up workshops, Origami – Skin Art workshops; meetings with patients, their families and the general public; interviews with the doctors of the Dermatology Department of the University Hospital; exchanges with health, education and sports professionals & interviews with local media.

India: Aarus Foundation

Monday 21st June – Friday 25th June: Virtual events and celebrations

20th June: Inspirational Seminar on “Know Your Worth” by Madhusudanavisnudas Madhusudana Vishnu DasIt’s free for all but registration is compulsory. https://bit.ly/3wT65SI

21st June: Conversation with Parul Shrivastava live on Instagram.

22nd June: Conversation with Mahesh Gowda live on Instagram.

23rd June: Conversation with @notbuffenough Nikhil Chugh live on Instagram.

24th June: Music video release on YouTube

25th June: Online meetup along with talent show.

Visit the Foundation’s facebook page for more informaiton: facebook.com/AarusFoundation

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!

membership iconBecome a member and be part of our mission