The VAA would like to invite applicants to appy for the Vitiligo Research Grant 2022.

The VAA Research Grant has been established to support local research into vitiligo in order to improve our understanding of this condition.  Preference will be given to projects that are likely to result in publication in the Australasian Journal of Dermatology.

Projects may be based on new or existing research.

To be eligible the applicant must be an Australian citizen and working has a health professional (medical, nursing or allied health) or a student or trainee in the health area.

The grant is to the value of $2000.  An initial amount of $1000 will be paid at commencement of the project period and the remaining amount will be paid upon receipt and approval of a progress report at 6 months after commencement.

The closing date for the receipt of applications is 30 June 2022.

The VAA Research Grant Application Form is available here.

Applications are to be submitted to info@vitiligo.org.au

COVID-19 caused by SARS-CoV-2 and declared as a global pandemic on 12 March 2020 by the World Health Organisation has raised many public health concerns across the world. For people with vitiligo, many are concerned of their health outcomes and vitiligo in the setting of the COVID-19 pandemic. So here is what the experts have to say so far about COVID-19 and vitiligo.

Does vitiligo increase my risk of contracting COVID-19 or potentially cause a worser health outcome?

Associate Professor John E. Harris, Director of the Vitiligo Clinic and Research Center at the University of Massachusetts Medical School have addressed these questions here. From a disease perspective, vitiligo is an autoimmune condition which causes the focal destruction of melanocytes. For most people with vitiligo, the immunity against infections such as COVID-19 should not be affected. While there is a condition called Common Variable Immunodeficiency Syndrome which can co-exist with vitiligo and in theory could cause increased risk of COVID-19, these cases are tremendously rare.

How does my management for vitiligo affect my risk of contracting COVID-19?

As Associate Professor John E. Harris have addressed above, therapies for vitiligo including topical and systemic treatments are unlikely to increase the risk of getting COVID-19. A publication by Dr Michelle Rodrigues, founder and director of Chroma Dermatology Pigment and Skin Colour Centre in Melbourne as well as chair of the global narrative committee of the Global Vitiligo Foundation, titled ‘Treatment recommendations for patients with vitiligo during COVID-19’ have recently been released here. The article offers advice to health professions on ways to continue treatment for patients with vitiligo in a safe manner during the COVID-19 pandemic.

Can I get vaccinated against COVID-19 if I have vitiligo?

This question has also been addressed by Associate Professor John E. Harris (here) as well as dermatologist Dr Richard H. Huggins (here) who serves on the board of directors of the Global Vitiligo Foundation. It is encouraged for everyone including people with vitiligo to undergo vaccination against COVID-19. It is not anticipated that the vaccine will have reduced efficacy and increased adverse events in those with vitiligo although these factors are currently being monitored. Given the potential risks of contracting and spread of COVID-19, it is recommended that everyone gets vaccinated.  

For any health specific questions regarding vitiligo or COVID-19, we encourage you to relay your concerns to your doctor.

The internet and social media serve as a valuable source of information and as a result it has become an integral part of our daily lives. There is an abundance of health-related information online which not only allows for greater accessibility to essential health information but also increase our engagement and awareness on health and wellbeing. Use of such information has led to many of us searching for diagnoses and clinical care on the internet, also known as a phenomenon, called ‘Dr Google’.

Although searching of online information has its benefits, it also comes with risks, and it is important for patients and health practitioners to be aware of such risks. A recently published paper reviewed 27 videos from healthcare sources and 22 videos from non-healthcare sources on vitiligo on YouTube.¹ The paper found healthcare resources had significantly greater accuracy compared to non-healthcare videos but unfortunately had much less views. Another study also analysed the topmost popular 100 videos on YouTube regarding vitiligo.² Results showed that of all videos, only 8% featured a board-certified dermatologist and many videos (78%) did not mention evaluation of treatment by a health care professional.

These studies remind us that it is important to be cautious when seeking health related information online and to seek professional advice when in doubt.

References:

1. Read C, Wu KK, Young PM, Armstrong AW. Vitiligo Health Education: A Study of Accuracy and Engagement of Online Educational Materials. J Drugs Dermatol. 2021;20:623-9.
2. Carrington AE, Kitts S, Kleinwaks E, Luu J, Nguyen M, Park JH. Vitiligo on YouTube: A cross-sectional analysis. J Am Acad Dermatol. 2021.

Dr Jennifer Nguyen - Secretary of the VAA

Currently there are many products available on the market which can be used to conceal vitiligo lesions. Camouflage products can be broadly categorised as:

1. Camouflage product – refers to a product that is designed or marketed specially to conceal a skin lesion or condition.
2. Cosmetic makeup – refers to commonly used foundation or makeup that may not be specifically designed for camouflage.
3. Sunless tanners – refers to fake tan/spray on tanning lotions which gives the skin a tanned like appearance without exposing oneself to the sun.

There is also a form of camouflage called permanent camouflage or micropigmentation/microtattooing which involves the application of tattoos of natural skin tones to mask the white patches.

Each type of camouflage has its advantages and disadvantages and may be more suited for some than others depending on their needs. For example, cream-based camouflage that can be applied on the skin may be useful to conceal vitiligo lesions however if you do a lot of sports and sweat a lot it can cause the product to rub off and sunless tanners in this case may be more suited for you. There are lots of things to consider for camouflage and that’s why the VAA is working on the Camouflage Project which aims to create independent information to help you learn more about different types of camouflage products and assist you choosing the one most suited for you. Once this project is complete, we will be sure to share it with you.

In the past few years, the VAA has hosted numerous free camouflage workshops. In these workshops, passionate camouflage experts volunteer their time to inform about various products available and how to apply use them for seamless camouflage. The VAA will be hosting another camouflage workshop later this year. Be sure to watch out for upcoming news on our facebook or instagram page about it and we would love to see you there!

For more information about camouflage, read here and here.

25/07/2020 - Camouflage workshop 1

XX/XX/XX - Camouflage workshop 2

09/10/2021 - Camouflage workshop 3

References:

1.  Ongenae K, Dierckxsens L, Brochez L, Van Geel N, Naeyaert JM. Quality of life and stigmatization profile in a cohort of vitiligo patients and effect of the use of camouflage. Dermatology. 2005;210(4):279-85.
2. Salsberg JM, Weinstein M, Shear N, Lee M, Pope E. Impact of cosmetic camouflage on the quality of life of children with skin disease and their families. Journal of Cutaneous Medicine and Surgery. 2016;20(3):211-5.

Dr Jennifer Nguyen - Secretary of the VAA

---

Some of you may be wondering how long we have known about vitiligo. It may surprise you but descriptions of ‘vitiligo’ like lesions date as far back as 3000 years ago in the Ancient Egyptian and pre-Hindu Vedic texts. The word ‘vitiligo’ is believed to have originated from the Latin term ‘vitium’ which translates to ‘blemish’. Throughout history, there have also been various images and texts that appear to depict what may have possibly been vitiligo, which you can read more here. Not much was known about vitiligo then and it was often confused with leprosy which also exhibited pale patches on the skin leading to stigmatisation targeted towards people with vitiligo.¹

In the mid-18^th to late 19^th century, vitiligo was finally recognised as a medical condition.^1,2 One of the most fundamental observations of vitiligo was by Hungarian physician and dermatologist Moriz Kaposi who described vitiligo lesions as having a ‘lack of pigment granules in the deep rete cells’.³ Since then increased awareness and research have led to much more being known about vitiligo. Ongoing studies in vitiligo continues as researchers all over the world aim to further understand the condition and develop new targeted treatment. A recent paper has shown that research in vitiligo has surged in the last 30 years.⁴

All efforts are contributed all over the world to raise awareness for vitiligo. Organisations, support groups and individuals across the globe work together make a difference to change the stigma that surrounds vitiligo and provide support for people with vitiligo. In 2011, the first Vitiligo Awareness Day was established. Since then, 25^th June marks the annual global event for World Vitiligo Day, read more here.

Looking back at the history of vitiligo, a lot more is known about vitiligo and there is greater awareness and support for people with vitiligo. There is still more work to be done and we look forward to that day when there is no further stigma, and a cure is found!

References:

1. Millington GWM, Levell NJ. Vitiligo: the historical curse of depigmentation. International Journal of Dermatology. 2007;46:990-5.
2. Spritz RA. Modern vitiligo genetics sheds new light on an ancient disease. The Journal of dermatology. 2013;40:310-8.
3. Kaposi M. Pathologie und Therapie der Hautkrankheiten. Urban und Schwartzenberg; Vienna: 1879
4. Katz EL, Harris JE. Translational Research in Vitiligo. Front Immunol. 2021;12:624517.

Dr Jennifer Nguyen - Secretary of the VAA

Vitiligo is a skin condition characterised by well-demarcated white patches caused by melanocyte loss or destructions. Melanocytes are cells that produce pigment and is responsible for the colour in our skin, hair and eye. As a result of melanocyte loss or destruction, vitiligo lesions may look like white patches as shown in the following images (courtesy of DermNetNZ.org).

However, not all white patches are due to vitiligo and it can be quite difficult to differentiate which condition is which based on photos. Here’s why! Have a look at the photos below and see if you can tell which condition might be responsible for each photo. 

Differentiating these conditions from vitiligo requires a skin examination. A handy tool your doctor may use include a Wood’s lamp which emits a violet colour light with wavelength of approximately 320-450nm. When the Wood’s lamp is shone over a vitiligo lesion it will shine a bright fluorescence white. Other clues may include examining the border, pattern, location as well as other features present in the lesion.

So, if you are suspecting vitiligo, see your dermatologists for an assessment and management. For more information about other conditions similar to vitiligo, have a read of Dr John E. Harris blog post here. 

Dr Jennifer Nguyen - Secretary of the VAA

The VAA is excited to announce our new website!

We hope the new website will be easier to navigate and direct you to the information you need. Remember to keep a close eye of our website and social media for updates, events and news.

Interested in becoming a member of the VAA? Stay connected and engaged with the vitiligo community and become a member today. Click the ‘Join Now’ link on our website and we look forward to hearing from you!

Hi, I’m Pia and I was diagnosed with vitiligo at age 46 which was just over a year ago. I was born in Melbourne, Australia. This is where I currently live although I spent some of my childhood in Darwin and Canberra. I grew up as a ballet dancer but transitioned to acting in my late teens. I studied at Victoria University and at The Atlantic Theatre company in New York City and I have been working as an actor and voice over artist since then, somewhat sporadically because most actors spend a lot of time out of work!

My heritage is half Italian/half Australian. My family on my Australian side have a history of autoimmune conditions with my mother and aunt both having alopecia, and my grandmother having psoriasis. I guess I always thought that I too may get alopecia, so being diagnosed with vitiligo wasn’t a huge surprise to me, although I do still worry about alopecia as I know sometimes the two co-exist.

I developed vitiligo whilst playing Survivor which makes sense as the mental and physical challenges are extreme. Dealing with the elements, feeling cold, sleeping in the dirt combined with the mental anguish that it creates is probably a perfect storm for an autoimmune condition. It was weird because we had no access to mirrors, so I didn’t see it happening in real time. I was told about it and got to see it eventually near the end of my time there. I just thought it must have been a fungus or something from sleeping in the dirt. I remember thinking how odd it was that I suddenly had grey eyebrows, but I didn’t connect the two at the time

When I came home I went straight to a Dermatologist who referred me to Michelle at Chroma Dermatology. She put me on a mix of tacrolimus and narrowband UVB therapy 3 times a week. I was getting pretty aggressive flare ups for the 2 months that I was back but as my body started to settle and it began to slow down. The treatment was pretty exhausting, but I stuck with it and I’m glad I did, although I felt like a fried chicken nugget when it was over!

I saw a Naturopath for my gut, did yoga and acupuncture which made me feel more settled. I know that doesn’t work for everyone, but it calmed me down as I was dealing with a lot of stress and anxiety. I felt like I was on a train I couldn’t get off and googling made me feel worse. I couldn’t stop because I was looking for answers. It was the worst. Also, as Survivor was screening I was watching reliving it all… it was like watching the old me disappear and a new me appear, all on TV in front of an audience.  I felt like I went through a mourning process watching it and initially I was embarrassed and ashamed, because everyone else looked fine out there and I felt abnormal. I felt sad that I didn’t get the time to deal with it in private but once I went public with it, I was so heartened by the support I received. So many people came forward and shared their personal stories of vitiligo with me and everyone was so kind and supportive, so instead of feeling shame, I actually felt inspired. I was also grateful that my eyes had been opened to a new awareness of beauty and privilege.

I had spent so long in an industry that perpetuates a narrow-minded view of beauty and is so dismissive of people who don’t fit the mould. I had spent most of my career trying to fit into this unattainable imagery and I was so busy trying to conform to it that I was oblivious to how this attitude affected the wider community.  Now I feel I can truthfully be a voice of change, as I have first-hand seen the amazing people that are disregarded because they don’t fit a prototype. I think the more our children grow up seeing differences as something to embrace, the healthier our attitudes will become. We have a pretty unhealthy view of beauty in our society at the moment and I feel like I was complicit in this for a long time by trying to conform to it. I guess being thrust into this in a public arena has helped me mentally, as there was a time when I was worried that my career was over because of vitiligo but now I see vitiligo as a blessing rather than a curse.

On the subject of treatment, I have had good results and re-pigmented quite a lot, I still have patches, but most have pigment to some degree rather than being completely white. I have a combination of hyperpigmentation and vitiligo so I’m quite patchy but I’m at the point now where I don’t wear makeup every day and although a lot of that is to do with my treatment results, mostly it’s a mental change. I still have days when I’m scared, and I feel alone or I see friends with perfect skin and I feel envious but most of the time I’m OK. I think about my kids and the guilt I will feel if they too get an autoimmune condition, but I’m working through that and hopefully I’ll have the tools to be a positive influence if it does happen. I still check my face first thing in the morning and I sometimes panic if I look at myself in a new lighting situation and see something different, but I know that’s all part of my journey.

To anyone struggling I would say don’t be afraid to reach out. It’s been the support of strangers, doctors and new friends that have gotten me through. Every kind word will help. Stories of hope and stories of acceptance will help. I think it’s hard because there are no decisive answers about how it is going to play out and every story is different but getting support from other people with vitiligo helped me a lot. Some days are good some are bad but there is no need to go through this alone. There are support groups available online and please feel free to reach out to me on social media.

Oh and don’t google!! I learnt the hard way!

Authors: Pia Miranda, Lauren Jimmieson and Tia Fijalkowski

The VAA invites members to submit their story to feature in the newsletter, if you are interested please email secretary@vitiligo.org.au.

We would love to hear from you!

In June 2020, the VAA was proud to announce the successful applicants of its first ever research grant of $2000 to support research that contributes to a better understanding of vitiligo. The grant was open to health professionals and students, including medical or nursing, junior doctors, specialists and allied health professionals. There were two excellent applications and the VAA decided to provide both applicants with a grant towards their research projects. The funds for the grants were raised through the VAA's fundraising activities.

The successful applicants and their research project were:

Dr Brent Doolan (Dermatology Research Fellow, The Skin Hospital, Darlinghurst NSW):

Project: “Doolan BJ, Weaich M, Gupta M. An analysis of patient satisfaction in a pigmentary disorders clinic from a quaternary referral service. Australas J Dermatol, [In Press], doi: 10.1111/ajd.13397.”

Patient satisfaction is the major indicator of quality of care provided by a health facility. In 2012, Australia’s first specialised pigmentary disorders clinic was established at The Skin Hospital, Darlinghurst to help manage difficult-to-treat conditions such as vitiligo. We aimed to assess patient satisfaction of this service by identifying areas of dissatisfaction and attempting to further improve the pigmentary disorders clinic. Using a Patient Satisfaction Questionnaire, we were able to ascertain good overall satisfaction with the service, as well as areas to improve. This study highlights the need for a referral service for GPs and dermatologists and the need for a dedicated pigmentary disorders clinic in the Australian setting.

Project: “A retrospective evaluation of patient profiles and treatment modalities used within an Australian pigmentary disorders clinic”

Currently in Australia, there is limited data on the demographics, quality of life, blood investigations and effective treatments used for patients presenting with pigmentary disorders, especially in the management of vitiligo. Treatment is largely based on data obtained from overseas studies and international clinical trials. We wish to perform a review of over 600 patients with pigmentary disorders from The Skin Hospital, Sydney to better understand this patient group. This landmark study is the first to investigate the profile of pigmentary disorders patients in Australia. The knowledge of clinical characteristics, associations and current treatment modalities may help improve management among this cohort and aid in determining if additional services are required in Australia.

Dr Jennifer Nguyen (Dermatology Research Fellow, Victorian Melanoma Service, Occupational Dermatology Research and Education Centre, Dermatology Department at Alfred Health and Vulval Dermatology at The Royal Women’s Hospital, Melbourne VIC and Secretary of the Vitiligo Association of Australia Secretary):

Project: “Use of Camouflage Therapy in Vitiligo: a survey for Dermatologists and Patients”

Vitiligo is a depigmenting skin condition that can affect any area of the skin. Individuals with vitiligo often experience significant psychological and social impacts. Currently, medical treatments available for vitiligo includes topical or systemic immunosuppressants, phototherapy or surgical grafting though results are often delayed or unsatisfactory. Camouflage therapy involves the use of pigments and dyes to temporarily conceal vitiligo and has been recognised to improve self-esteem and quality of life in adults and children with vitiligo. Despite this, there is limited information regarding camouflaging products for vitiligo and its general use by dermatologists and patients for vitiligo. This project will aim to investigate the current accessibility, usage, perceptions and barriers regarding camouflage products for vitiligo patients and dermatologists around the world. Results of this survey will allow for better understanding into the awareness and attitude to camouflage therapy for vitiligo patients.

The Vitiligo Association of Australia hosted the Camouflage Workshop online this year. The
workshops were held over two days on 25th July and 1st August 2020. We had camouflage
experts locally and internationally speak to us including Joanna Blair from the School of
Makeup in Australia, Julie Buckley from Colourderma Solutions and Hair and Vanessa Jane
Davies from the Skin Camouflage Services in London. We also had company representatives
including Polly Gotschi from Oxygenetix, Rae Denman from Veil, Rajja Richani from Kryolan
and finally Michelle Weaich who is a nurse from the Skin Hospital in Darlinghurst, spoke to
us about Zanderm. We are very grateful from all the speakers of the event who have shared
their expertise and knowledge and a special thanks to Cameron who shared his story of
vitiligo and camouflage on the night.

There were wonderful discussions and members were able to learn about the history of
camouflage, camouflage products available, tips and tricks and the opportunity to ask
experts questions. There was a strong message throughout the workshop that camouflage is
all about empowering patients and provide the choice to anyone who would like to conceal
their vitiligo areas. What matters most is for patients to feel comfortable and beautiful in
their own skin. We look forward to continuing the VAA Camouflage Workshop next year so
please do join us.