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What it’s Like to Live with Universal Vitiligo as an Indian Woman

Sheetal Surti was just seven years old when she first got vitiligo. By the time she was twenty-two, the UK resident had lost 100% of her skin’s pigment–and, she felt, her identity as an Indian woman. With her brown pigment replaced by pearly white skin, Sheetal was beginning a new journey. But that didn’t mean it was an easy one.

Growing up with vitiligo, Sheetal was used to staring eyes and being told that vitiligo was going to ruin her life. Both were a constant in her life, whether it was judging glances from strangers or insensitive and unwelcome comments about her skin. The spotted patterns on Sheetal’s skin were a magnet for this kind of negative attention. That all changed when she lost 100% of her skin’s pigment–but the struggle did not.

Today, the daily stares and comments are gone and Sheetal is thankful for that. But those challenges have been replaced with others–namely, the loss of her identity as an Indian woman and a continued struggle to embrace the skin she’s in.

“I lost who I was and my identity as an Indian girl,” said Sheetal, sharing what life is like with fully depigmented skin. “I’m still working through that and trying to figure out how to get it back.”

For Sheetal, it feels like she has to prove her Indian identity to others regularly. Whether she’s dressing up in traditional clothing or speaking in Gujarati, she often finds others–who assume she is English–in complete shock. But perhaps what hits home the hardest is family gatherings when a camera is pulled out–and Sheetal often finds that she doesn’t look like she fits in with the others in the photo.

Moments like these feel isolating–and often trigger emotions that tie back to years of living and struggling with vitiligo. The spots might be gone–but the emotional trauma is still very much alive as Sheetal thinks about her vitiligo daily, and sometimes multiple times a day.

“People assume that because I no longer have visible patches, that I no longer have anything to worry about,” said Sheetal, who says she’s still working on accepting her skin today. “Or that I should count myself lucky.” In fact, people consider her so lucky that they reach out to tell her just that–and ask for her secret.

“I quite frequently have Indian women with vitiligo contacting me privately through social media to ask how they can get their skin like mine so they can be happy,” said Sheetal, who finds it upsetting to be so misunderstood. “They refuse to believe me when I tell them that I didn’t take medication for my skin to be the way it is.”

Moments like these have only further motivated Sheetal to take action to drive awareness and education around vitiligo, using her own story to do just that. Starting with a single post on social media, Sheetal was amazed at the supportive feedback she received. From there, she continued posting on social media and eventually started sharing her story with the media.

“I’m trying to turn this around to raise awareness about vitiligo and universal vitiligo,” said Sheetal, who has been featured in outlets like BBC, The Sun, Insider and Living Dappled.

Today, Sheetal lives in Majors Green, England with her two daughters and her husband. She volunteers for the Vitiligo Society where she helps run VitChat, a service where those with vitiligo can chat directly with Sheetal about their experiences and seek information. Together with sharing her story, Sheetal has found that advocating for the vitiligo community has started to help restore her confidence.

“I realized the power I had if I chose to accept my vitiligo,” said Sheetal, who has found happiness in being able to support others through her work. “Sharing my struggles is helping others, so for that, it’s worth it.”

COVID Vaccination & Vitiligo

Since the pandemic, there have been continuous questions around the safety of the vaccination and the potential impact it could have for someone with vitiligo. Some of the major concerns raised amongst the community include whether the vaccination could worsen the condition, if it’ll trigger the onset of vitiligo and what reaction someone with vitiligo is likely to have. In this feature, Consultant Dermatologist, Dr Jonathan Batchelor answers some of these questions and shares what the vaccination could mean for those with the condition.

As more people have received COVID vaccinations during the ongoing pandemic, there has been increasing interest in whether or not these vaccinations have any adverse effects on those who receive them. As with any vaccination, mild reactions to the vaccine (fever, arm pain) are common and these settle quickly. However, there have been some reports of more severe reactions in a limited number of recipients. Thankfully, these reactions are rare and so for the vast majority of people, it is still strongly advised to be vaccinated against COVID and to receive booster vaccinations at the appropriate times, to reduce the risk of becoming severely unwell during COVID infections. This is particularly important for the elderly, those from the BAME community and those with weaker immune systems (due to illnesses or medications).

In the dermatology literature, some of the rarer adverse reactions to COVID vaccination that have been reported include worsening of pre-existing skin conditions such as eczema and psoriasis, or the new onset of autoimmune conditions such as bullous pemphigoid. The precise mechanisms for this are not fully understood, but it is probably due to the immune activation triggered by the vaccination, which in turn causes inflammatory responses in the recipient’s skin or causes the body to develop autoantibodies against certain structures in the skin.

There have been some rare reports of people developing vitiligo for the first time, or there vitiligo has worsened shortly after receiving COVID vaccination. The mechanisms which cause this are likely to be similar to those in other conditions, with the immune activation leading to autoimmune / inflammatory destruction of the melanocytes in the skin. However, such reactions are thankfully very rare and appear in the dermatology literature as single case reports or case series (small numbers of cases). Also, some of the reported cases occurred in people with a family history of vitiligo, so they would have been at higher risk of developing the condition anyway, and it cannot be certain that the vaccination was the cause. To date there have been no reports of large numbers of people in vaccinated populations having these reactions. In other words, the majority of people who receive the vaccination will not be at risk of new onset vitiligo or worsening of pre-existing vitiligo.

To summarise: although there have been rare reports of people developing vitiligo for the first time, or experiencing a worsening of their vitiligo, shortly after receiving COVID vaccination, the majority of people who receive the vaccination will not be at risk of these reactions. It is important for all eligible people to receive COVID vaccination to protect themselves and others from this potentially serious illness.

Article written and researched by Katarzyna Stefanska, reviewed by Dr Jonathan Batchelor.

Considering Botox? Here are 5 things you should think about before you go ahead

If you are reading this, it probably means that you are thinking about different ways to minimise the effects of aging. You have tried anti-wrinkle creams, facial exercises and avoided too much sun exposure, however, the thought of trying anything too extreme such as permanent surgery feels a little to evasive for many of us. However, in recent years, Botox or Dermal Fillers have become a way for people to slow down the visible effects of aging.

There are always risks for anyone having procedures such as Botox or Dermal Fillers, but if you have vitiligo there are a lot more things to consider.

About Botox and Dermal Fillers

In case you don’t know, Botox prevents the flexing of muscles that cause wrinkling, while dermal fillers fill in the type of wrinkles that come from a loss of collagen, volume and elasticity.

Many questions have been raised by those with vitiligo around the safety of Botox and Dermal Fillers, with many people concerned as to whether these procedures on the skin would aggravate vitiligo and cause more patches to appear. 

For that reason, some people have decided against tattooing because of uncertainty. However, others decide to go ahead anyway.

Can Botox and Dermal Fillers make your vitiligo worse?

It’s difficult to say for sure what the effects might be on vitiligo, as we are not aware of any research on this having been carried out, although our dermatologist theorise that they do not think there is any specific biological reason why the botulinum toxin or the chemicals used in fillers should interfere with melanocytes in vitiligo. However, any trauma such as an injection of any material might set off the Koebner phenomenon, so this is the main consideration here.  

With a filler there might be more risk of this phenomenon and skin damage due to the nature of the agent being injected inducing an inflammatory reaction, especially when fillers are used on sensitive areas such as a patient’s lips.  

So before you go dashing off to book in your first procedure, here are our top 5 things to consider:

1. Research, research, research! Botox is essentially injecting your muscles with Botulinum Toxin that temporarily relaxes the facial muscles which help to prevent wrinkles. It is essential that you carry out research and ensure that you find a reputable and licensed Doctor to carry out such procedures. Unfortunately, there have been many cases of bogus Doctors injecting clients with fake Botox resulting in severe swelling and burning.  To check whether a Doctor is accredited, you can check on the Professional Standards Authority for Health and Social Care.

2. Check the general risks associated with these procedures, any clinic offering them should offer you a consultation with a prescribing nurse who can talk you through the general risks & and a practitioner who can outline the different procedure options, cost and potential results.

3. Make sure that you are aware of the stability of your vitiligo, which type you have and how long you have lived with it. If your vitiligo is active or if you have already noticed appearance of the Koebner phenomenon, then you should avoid both Botox and fillers as they would already be more liable to get an adverse reaction that might spread depigmentation. Remember the person doing the procedure might not be aware of vitiligo or the risk of Koebnerisation – so be prepared to talk about both. Make sure you feel confident the practitioner understands your condition.

4. Have a think about area you having these procedures, especially when consider your face – will you still like the results if your skin becomes lighter due to a new patch forming?

5. Consider trailing a single injection on a more hidden part of your body to see if the Koebner phenomenon is triggered. Always ask the person carrying out the procedure, and your dermatologist about risks before proceeding. Remember, your dermatologist will be the best person to decide how your vitiligo might react to such procedures.

I hope this has been of some help to you and, whatever you decide, just make sure you do as much research as you can first and always chat to your doctor or dermatologist first.

News

New Vitiligo Society Christmas Jumpers Launched!

We are so excited to announce that we have created our very own Vitiligo Society Christmas Jumper, with our unique Vitiligo Bear modelling a Santa hat! We hope you love them as much as us!

They are a great way to raise awareness of Vitiligo whilst also supporting the work that the Charity does in education, support and research. Plus they will look great at your Work or School Christmas Jumper day!

We have Adults and Kids jumpers available now on our online shop with different designs and colours to choose from.

Shop the Christmas Collection Now!

Join our Annual General Meeting and Research Summit November 2022

We are thrilled to announce an incredible line-up of speakers over two virtual events taking place on Saturday 26th November 2022. Our AGM and research Summit will be your opportunity to hear from our Society and leading experts who have extensive knowledge in vitiligo research, current & future treatment options.

Join the events

Event tickets are free, but we do encourage you to donate if you can. Use the below buttons to read more and register for each of our events.

AGM Research Summit 11.00 – 12.00 Annual General Meeting (Members Only)

Our charity’s Annual General Meeting (AGM) is the year’s most important meeting. It will provide our members with an overview of the organisation’s current position, including its finances, and confirms our mission.

This year we welcome guest speakers, who our members have invited to talk to us about their work in the field of dermatology, immunology & vitiligo.

To join the AGM event you will need to be a Society member, find out more about joining us by clicking the below button.

Become a member 12.45 – 16:00 Research Summit (Open to all)

Following our AGM we will host an open Research Summit for anyone to join online and hear updates from a range of experts.

12.45 Welcome from David and John

A welcome from the Society Parton Professor David Gawkrodger, Honorary Professor in Dermatology & John Dunster, Society Chairperson.

13:00 Dr John Harris

Update on vitiligo: New discoveries, new treatments & new hope

Talk Summary: Dr John Harris joined us at our first Summit event in 2020 where he presented on his pioneering work in vitiligo research. He’ll be joining us again to update on progress over the past two years and discuss what the future of vitiligo research and treatments might look like. 

13.30 Dr John Ferguson & Dr Mark Turner

New research on Vitiligo, illness perceptions, and stigma

Talk Summary: In this talk John, Mark and their team will discuss new research from a Tertiary Clinic for Vitiligo and the implications for its multidisciplinary treatment.

14:30 Dr Faraz Ali

Introducing the Dermatology Life Quality Index App & its uses in the management of vitiligo

Talk Summary: Dr Faraz Ali provides an overview of quality of life measurement in vitiligo and introduces the new official Dermatology Life Quality Index (DLQI) App that may be used by patients and clinicians in the management of vitiligo.

15.00 Dr Viktoria Eleftheriadou

An update on the BAD guidelines on the Treatment of Vitiligo & the CBT vitiligo clinical trial

Talk Summary: The British Association of Dermatologists produces a range of clinical guidelines using a process that is accredited by the National Institute of Health and Care Excellence. These guidelines shape the care and treatments that patients are offered in the UK Dr Eliftheriadou will talk through the recent updates on the guidelines for the treatment of vitiligo, and why they are important.  She will also speak about her involving trialling the treatment of psychological effects of vitiligo through Cognitive Behavioural Therapy.

15.30 Dr Eugene Healy

An introduction to the Phototherapy Enhanced via Artificial Intelligence lasers (PREVAIL) project for vitiligo treatment.

Talk Summary: PREVAIL for Vitiligo Our “PhototheRapy Enhanced Via Artificially Intelligent Lasers (PREVAIL)” project, funded by an AI in Health and Care Award, is developing automated techniques for the treatment of skin disease, including vitiligo, via targeted delivery of laser light. This artificial intelligence (AI) mediated approach will improve treatment of diseased skin while reducing risks in adjacent normal skin for patients undergoing treatment with UV therapy.  Join the events

Event tickets are free, but we do encourage you to donate if you can. Use the below buttons to read more and register for each of our events.

AGM Research Summit

School Support Pack now Available!

It can be overwhelming sending a child to school, into a new environment where they may be asked questions about their vitiligo and appearance. Over the last 18 months we have had parents ask us to create a presentation or information pack to help schools support children with vitiligo. With the help of a number of parents and teachers we created this pack for parents, carers and concerned relatives to download and share with their child’s school.

This initial pack is aimed at supporting young people up to the age of 12, and will be followed soon by a pack to help support teens. 

What is included in the pack?

Our School Support Pack provides information and guidance to help schools give the best possible support to children living with vitiligo, including:

Guidance for Teachers – helping teachers understand how to support a child with vitiligo‘About Vitiligo’ Schools Presentation – helping explain to young people what vitiligo isVitiligo Reading List – lots of stories and useful books for all agesAn email Welcome Series, helping to signpost subscribers to articles, information and services aimed at supporting parents of children with vitiligo.

Download the pack

We want to say a huge thank you to all the parents, teachers and Sylvia Prince Designs for giving their time to support this project. We always welcome your feedback! Please get in contact to let us know if the pack is helpful, or if there are any other educational resources you need. 

Leading toy brand release research on the importance of diversity in products for children

As children prepare to head back to school for the new academic year, issues of self-confidence, attitudes and acceptance towards others and mental health have never been more important.

In a survey of 1,000 British parents, over half of those surveyed believed that diversity and representation in toy brands is crucial for helping children to develop self-confidence and more positive friendship attitudes towards their peers, particularly those with disabilities.

The new research – by leading toy brand Rainbow HighTM from MGA Entertainment – revealed that a staggering 79% of parents stated that diversity is important to them when purchasing toys and this figure rises to 88% for younger parents, aged 19 to 24.

It’s no surprise toys and characters with disabilities (52%), different ethnicities (44%) and visible differences (44%) are the top three representation parents would like to see more of.

With more and more toy brands also getting their own entertainment shows on the likes of YouTube and Netflix, parents want to see representation within the characters on these episodes, with 49% of parents agreeing it helps to normalise differences and break down stereotypes and 35% saying it can help prevent stigmatisation. Over a third of parents (34%) believe increased representation has a positive impact on children’s mental health.

Natalie Ambersley, a trustee at The Vitiligo Society, understands the importance of children being able to see themselves represented in toys and entertainment, as she has grown up with vitiligo. She said, “it’s great to see brands like Rainbow High introducing dolls with visible differences. It’s really important to raise awareness and its equally important toys like Rainbow High are diverse and inclusive so children can understand how everyone is unique and encourage others to feel confident in their skin.”

Michelle Lilley, Marketing Director for UK and Ireland at MGA Entertainment, said: “Championing diversity and inclusion is – and has always been – central to MGA Entertainment. Brands such as BratzTM and L.O.L. Surprise!TM have led the way on representation, both in terms of ethnicities and visible differences. This recent launch from Rainbow High continues this commitment and we’re proud to have launched a new series of dolls that features characters with vitiligo and albinism.

‘These characters also take central stage in our entertainment content – on Netflix and YouTube– as we know how important it is for children to see representation on all platforms. We’re not surprised to see that half of parents agree that seeing these characters has a positive impact on a child’s perception of the world and are seen as learning tools, as children are exposed to more content on digital platforms today than they were 20 years ago.”

The Vitiligo Society was thrilled to work with the Rainbow High Brand to raise awareness of this research, and want to thank their organisation for their recent pledge donation of £3,000 to help support our work.

FDA grant approval for Opzelura

The U.S. Food and Drug Administration granted approval on for Opzelura, which is the first topical JAK inhibitor cream for the treatment of vitiligo for people 12 and older.

“There’s a large unmet medical need here in vitiligo. This opens a completely new door, new avenue for them and for patients who want therapy to repigment.” Dr. Steven Stein, Chief Medical Officer at Incyte.

“With the approval of Opzelura in nonsegmental vitiligo, Incyte has once again delivered a treatment to patients with high unmet medical need who previously had no approved therapies,” Hervé Hoppenot, Incyte’s chief executive officer, said in a press release. “We are proud of Incyte’s scientists and development teams that have made this milestone possible, and we’re pleased that eligible vitiligo patients now have a choice to address repigmentation.”

“Emerging topical JAK-inhibitors, like Ruxolitinib (Opzelura), are a promising option,” Dr. Mansha Sethi, a board-certified dermatologist in Houston said. “I personally have used JAK inhibitors off-label for several patients with vitiligo. Since it’s off-label, patients have to spend hundreds of dollars out of pocket to buy them from compounding pharmacies.”

But now, with FDA approval, insurance companies are expected to begin covering this prescription drug.

Results of the trial showed “Adolescent and adult patients with vitiligo achieved substantial facial and total body re-pigmentation within 24 to 52 weeks of therapy.”

Half of all participants had 75% improvement of their facial vitiligo after one year using the study’s measurement of repigmentation.

Dr. David Rosmarin, director of the Clinical Trials Unit at Tufts said the side effects were well tolerated, “Six percent of patients will get some acne, which is usually mild. And about 6% can have an application site reaction, which could be some redness,” Rosmarin said. “It has a very favorable safety profile, topical easy to use, and has proven to work very consistently.”

The medication requires a prescription and is applied as a cream to clean skin on areas affected by vitiligo twice a day.

An announcement is expected late 2022 in relation to approvals for use in the UK and Europe.

Join us as we celebrate World Vitiligo Month 2022

On 24th June, at 7pm our trustee Natalie will be hosting a number of incredible speakers sharing information, tips and advice on how to live well with vitiligo. 

‘The connection between lifestyle, nutrition and mental wellbeing’

Kay Rai, Registered Nutritionist

Kay has personally been diagnosed with multiple autoimmune conditions including vitiligo. After seeing first hand the effects of adapting to healthier food choices had on her health, she   enrolled to study at the London College of Naturopathic Nutrition (CNM) to understand more. Armed with clinical practice and a deep knowledge of nutritional science, Kay launched Inspire Nutrition to help others through their health battles. ​

Following her recent VitLife article, Vitiligo & Mental Wellbeing; Food, Mood and Gut’, Kay will explore the connection between lifestyle, nutrition and mental wellbeing.

‘The Power of Community’

Erika Page, Blogger & Living Dappled Founder

The founder of Living Dappled, the #1 women’s lifestyle blog about vitiligo, Erika Page got vitiligo as a child and ultimately lost 100% of her skin’s pigment to the condition. Erika Page serves as the editor and spokesperson for the brand. She has spoken at the U.S. World Vitiligo Day conference and has been featured on DermHealth.Co’s Heal Thy Skin podcast, Channel Kindness and The Pretty Pimple. In 2021, Erika Page was named the #4 most influential vitiligan for the second year in a row through a survey conducted by Unite for Vitiligo. 

Erika will share her personal story about connecting with others with vitiligo and why this can be such a powerful, transformative tool for finding healing and confidence when you live with vitiligo.

‘Vitiligo Camouflage and Coverage Techniques’

Nina Brown, Camouflage Practitioner at Changing Faces & Beauty Therapist.

Nina has 37 years experience in the beauty industry, and her career spans many fabulous therapies and experiences. She is most passionate about providing treatments and services which give confidence, making a difference to the way we see ourselves. As well as working in theatre makeup she has also lectured in Beauty and Holistic Therapy, Electrical Epilation and Media Make-up. 

Nina will be talking about the use of camouflage in giving us a choice over our appearance and a sense of control over how we want to look day to day. She will discuss the use of different coverage techniques in building confidence and self-esteem so that we feel empowered to lead the lives we want.

‘Feel confident with your vitiligo this summer’ 

Natalie Jones, Coach at Every Body Beautiful

After developing Vitiligo and feeling low self worth and confidence as a result, Natalie spent the past decade researching how to heal her skin and restore her confidence. She studied how nutrition, lifestyle habits and mindset work together to support and nourish our skin. Along the way, she gained valuable insight into what really matters most when it comes to the wellbeing of our skin and truly being happy in it. She felt so passionate about sharing what she’s learned to help others with skin conditions, she trained to become a coach and now enjoys sharing her unique approach to help skin journeys feel easier.

On World Vitiligo Day, Natalie is excited to share some helpful tips for feeling more at ease in our own skin during summer. Natalie understands how we can have mixed feelings about revealing our skin, so she wants to share some key mindset strategies that helped her shift her attitude towards summer so she could actually enjoy it more freely again. Natalie believes we all deserve to feel good in our own skin and she’s excited for you to feel more at ease this summer too!

Register for our free event here: https://viti.li/22

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-face 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

Released in the US under the name Opelzura, 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 because 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 encouragment 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