It’s hard to believe that we’ll soon be saying farewell to 2023, a year that saw the breakthrough of a potential new treatment for vitiligo, the coming together of the community as we celebrated the 12th World Vitiligo Day and the positive stories that we continued to see in the media that not only inspired us and continued to bridge the inclusivity gap, but contributed to our mission to raise awareness and teach the wider public about our skin.
As I start to reflect on the year my mind drifts back to the many moments that are a reminder why raising awareness is so important and how much we’re making a difference. It’s been another strong year, and as we continue to do the work we do as a society and provide the services we do to our members and the community, i’m proud to see that the perception of vitiligo is changing and becoming more normalised as people are becoming more familiar with the condition. It’s what we’ve wanted for a very long time.
There have been some great moments this past year. From story books featuring characters with vitiligo to body positivity shows celebrating diverse bodies. Here are some of my favourite moments and stories from this year:
LEGO Friends with disabilities introduce eight new characters including Jordin with Vitiligo
In March, Lego released five new diverse toy figures including one with vitiligo to celebrate ‘the diversity in modern friendships’.
Lego has a rich history in the toy market so the news of this diverse new range was a huge deal, especially for those who could relate. Each character came with its own story; there’s Liann who “is naturally curious and impulsive”, whilst Paisley “sometimes struggles with anxiety” and then there is Fiona who loves arts and crafts and has Down’s Syndrome. Then there is Jordin who has vitiligo. Really great to see such an iconic toy brand leading the way with diversity and change.
Huge Breakthrough in the treatment of vitiligo
The news of a new treatment called Ruxolitinib that could return the skin colour back to its natural colour felt like a big breakthrough in the community when the news broke in the UK in March. There was a lot of press interest in what this could mean for those with the condition and the hope it has given patients that a ‘cure’ may be closer than we think.
Ruxolitinib, which is branded Opzelura could be available on the NHS in February 2024 and is currently being reviewed by the National Institute for Health and Care Excellence (NICE). Termed as a ‘miracle’ cream by the press, it was first introduced in the United States in 2022 with some patients seeing positive results (mostly on the face) after a few months of use. If approved, Ruxolitinib will be available for those aged 12 years and older with non-segmental vitiligo.
The Launch of Naked Education; a Body Positivity Show on Channel 4
In May, Channel 4 launched Naked Education, a six part educational series that aimed to normalise all bodies through the stories of real people who had overcome a very personal battle with their body.
I was approached by Channel 4 during the initial stages of production and asked if I would be willing to play a part in the show by sharing my journey with vitiligo. It took a few weeks for me to decide. I grasped that it would be a great opportunity to give vitiligo a voice on the show but I was also nervous about the exposure and sharing parts of my story that still made me feel vulnerable. I agreed to take part and was chosen for the teen segment which would be an open conversation about my vitiligo and being open to questions from the group. It turned out to be one of the best things i’ve done! The group I got to speak with were engaged and understanding and keen to ask questions. The part that was shown was a small snippet of the 45- minute conversation we had on set.
It was difficult not to get emotional when the host, Dr Alex, asked ‘what I would tell 10-year old Natalie if I could go back’ which at that point, I struggled to get my words out. Thinking about myself as a once innocent little girl was difficult to do without a few tears. The little girl that had no idea that her skin was going to be stared at, judged and would be the reason she struggled with confidence and self esteem.
I learnt a few things about myself after taking part in the show, the most revealing being that you can have all the confidence in the world after overcoming a difficult journey but ultimately your story is still very much part of who you are. What would I tell my 10 year old self if I could go back? I’d simply tell her to love herself for who she is and to remember that she is so much more than her skin.
We Celebrated World Vitiligo Day for the 12th time!
In June we celebrated World Vitiligo Day with global communities, support networks, individuals and charities coming together to raise awareness, share stories and educate the wider public about the condition. It is such a proud moment for so many of us!
We celebrated at the Society by hosting an online summit with a great line-up of guests. We welcomed Dr Linda Papadopoulos who spoke about supporting a family member or partner with vitiligo, Joti Gata Aura shared her inspiring personal journey with the condition as did Kirps Bhogal and lastly Charlene Douglas, relationship expert on Married at First Sight, gave advice on how to approach dating, relationships and intimacy with confidence.
You can watch the replay of the summit here on You Tube if you missed it!
Rainbow Magic released ‘Lois The Balloon Fairy’ which features a lead Character with Vitiligo
Children with vitiligo were delighted when Rainbow Magic, the long running popular children’s book series, released Lois The Balloon Fairy which featured a leading character with vitiligo.
The story, which follows four friends on a mission to help Lois the Balloon Fairy find her magical balloons before a birthday party, is the first of its type to include a character with a skin condition. The publishers were keen to ensure vitiligo was accurately represented in the story and so reached out to us for guidance. It was incredibly rewarding and satisfying to read such an imaginative story where the character confidently explained to the other kids what vitiligo was. It was so lovely to see a personal message to the Vitiligo Society at the start of the book, thanking us for our contribution! Lois the Balloon Fairy is available to buy now on Amazon.
Self Magazine Explores Vitiligo
Self, an online American magazine has featured a number of informative features throughout 2023 that discusses vitiligo from a number of viewpoints. Features include 6 ways to embrace your depigmentation according to people with vitiligo, The winding journey to finding the right vitiligo treatment and why is there still so much stigma tied to vitiligo. Each feature gives insight into vitiligo and an understanding of what it is like for people with the condition. Some really informative reads that I highly recommend!
Glasgow Beauty Queen’s Vitiligo ‘Pillar of Strength’ Mission after Cruel Poolside Comment.
Aimee McKay was crowned Miss Great Britain Glasgow in the summer despite once covering her skin in thick makeup to disguise her patchy skin. Most of us know the history of beauty pageants and the strict guidelines that contestants have to meet before being accepted to take part however, it seems (and finally!) all women are being given the opportunity to take the crown.
Aimee, who has lived with vitiligo since she was nine years old, said in an Instagram post “when I was younger the negative force from Society and my own self doubt made me feel like I ‘suffered’ from vitiligo. Now, however I choose not to be a victim to the beauty standard and have found power to embracing what makes me unique”. She then went on to say how we (society) are addicted to perfection and that we need to change the way we perceive beauty.
Feature Photo by Adam Jones.