Why I believe this day is so important
“Happy World Vitiligo Day!” was probably not the first utterance out of your mouth when you woke up this morning. Nevertheless, today – 25 June 2016 – is #WorldVitiligoDay and, in my opinion, an important date for everyone affected by #vitiligo.
If you would like to know what this date is all about my post from this day last year is worth a read. I would, of course, especially recommend a visit to the World Vitiligo Day website, 25june.org for all the first-hand information and check out the Facebook page and @WVitiligoDay on Twitter. I have also copied the World Vitiligo Day #petition letter from that site at the bottom of this post so that you can see immediately how important this campaign really is.
Today is not like other dates in the calendar
Today is not like other, more famous dates in the calendar...
It is not a day of celebration like a birthday (although the creation of this excellent campaign five years ago is definitely worth celebrating).
It is not a day of appreciation like Mother's Day (although I think it is a fine opportunity to appreciate everyone affected by, or involved with, vitiligo and its treatment).
It is not a day of commemoration like the anniversary of a prominent historical figure (although the date of Michael Jackson's death is a poignant reminder of the fact that he suffered with the condition.)
Neither is it a day for remembering past military battles or pivotal political events (although it certainly reminds us that there is a battle in progress and a victory to be won).
My view of World Vitiligo Day
My view of World Vitiligo Day is that it is a day of hope and solidarity for the estimated 70 million people worldwide living with this skin disorder, and for their loved ones who so often share in their distress. It is a cause to rally behind and a call to action for each one of us who believe that far greater awareness and understanding of vitiligo is needed – in society at large and also in the medical and scientific community – before vitiligo sufferers everywhere receive the levels of recognition, support and therapy they deserve.
World Vitiligo Day offers us all a chance to influence the outcome of this battle in progress and to achieve our victory that much sooner. By adding more names to the petition to have this date observed every year by the United Nations we will raise awareness, improve understanding, change faulty perceptions and secure more funding for treatments far faster than we could hope to as individuals.
So I do indeed wish you a very happy 5th World Vitiligo Day. I hope that we will all celebrate, appreciate, commemorate and remember its significance. And I hope that it will inspire many more of us to action, bring us closer together, fill us with hope and provide a voice to the millions of us whose message has not yet been heard.
World Vitiligo Day petition letter
Hear us as we speak with one voice about human rights, healthcare and education. We, the undersigned, are just the few of estimated over 100 million people living, working, taking care of children across the world with this neglected disease, vitiligo.
We contribute to every single industry and culture in the world. We are the rich and the poor. We are the face of the entire all neglected disease community. You find us in schools, hospitals, on TV and movies screens, sport arenas, and churches, while many went into seclusion and voluntary isolation from society.
Although vitiligo daily has destroyed the lives of millions of individuals since recorded history, predominantly in the developing world, there is no cure in sight. But few diseases give rise to more fear and loathing than vitiligo, especially in dark-skinned people, in whom it can be strikingly prominent. And because it is not contagious or life-threatening, we often receive no support whatsoever from our national healthcare systems.
Thus, I support the initiative 25June and respectfully require the United Nations to
1. Urgently pursue multilateral efforts in vitiligo healthcare and education, and to
2. Designate June 25 as the World Vitiligo Day.
Mr. Secretary-General, please hear our voice. We know you can encourage Member States to respect our rights. Please pursue policies supportive of neglected disease collaboration, vitiligo in particular. This is central to the human rights and personal dignity of millions of women, men and children on this Earth.
Yours in health and freedom,
To find out more, or to sign the petition, please go to this page of the World Vitiligo Day site - and please send your friends and family too :).
Tell your story, make a difference
Those of us on the inside of the “vitiligo community” know only too well how profoundly the loss of normal skin colour can affect a person. We know all the ways, great and small, that the condition impacts on our daily life, on our confidence and even on our sense of self. We understand the feelings of isolation and vulnerability that come with having a highly visible difference in our appearance, especially as this difference often invites casual curiosity and rarely meets with genuine understanding or empathy. We share a sense of frustration that a disorder shared by roughly one person in every hundred around the world is still so under-publicised and poorly recognised. For this reason, I am always happy to come across serious media interest that seeks to dispel the almost universal ignorance that exists about #vitiligo and its effects.
Who fancies a Knickerbocker Glory?
This week I received an email from a #television production company here in the UK called Knickerbockerglory which is currently (summer 2016) in the process of producing a powerful documentary series aimed at challenging people’s #preconceptions about various topical social issues. One of the programmes in the series will look at facial differences using first-person testimony to explain the impact of this on people's lives. The company would like to include someone who has facial vitiligo in order to raise understanding and awareness about the skin condition and also expel the stigma and stereotyping that so often comes with it.
If you feel that you might be willing to take part but want reassurance that the programme would handle you and the subject matter sensitively I would encourage you to watch the first film in this series, My Name Is… and I’m An Alcoholic, which was screened in January for Channel 5 and received outstanding reviews from both viewers and the recovery community alike.
If you take a look at that programme (just click on the highlighted programme title link above) I am sure you will agree with me that this format offers an extremely insightful and effective way, not simply of educating viewers about what vitiligo is, but of helping them get "inside the skin" of the vitiligo sufferer and appreciate what it is like to deal with the condition on a daily basis.
So, if you have vitiligo on your face and would like to discuss the possibility of participating in this programme please email Suki on: firstname.lastname@example.org or call 0208 740 6300.
I know that it takes a tremendous amount of courage to do something like this but it is an amazing opportunity and I really think it will make a difference to how vitiligo is perceived and understood.
Don't forget World Vitiligo Day is June 25th
And what better time to do something proactive to raise awareness since next Saturday is World Vitiligo Day 2016? Whether or not TV appearances are for you, I hope you will find some way of getting the word out about vitiligo in your community or further afield. I, for one, am hoping that the requests so many of us sent in over the past few months to the #GoogleDoodle team to mark the day with one of their famous doodles will have paid off because the effects of this would be massive. But if not, we will certainly keep pushing for next year!
Skin colour and identity
I'm sure I am not the only person to have occasionally pondered the question “who am I?” We all know we have a physical body but we also know there is more to us than that. So what is it that makes me uniquely me? Am I the voice I hear in my head while I think these thoughts? Am I the emotion I experience in my heart? Or am I spirit, tied to the earth for a while, waiting to soar into infinity when I no longer need my earthly body? Wow – this is a bit heavy for a #vitiligo blog, right? Yes, it is. Don't worry, though. I'm not going to attempt to answer the lofty questions that have occupied philosophers down the ages right here and now! But I do want to touch on the part that our skin plays in the question of who we think we are.
Perception is everything
I don't know who coined the phrase “perception is everything” but – even if it is not quite everything – it certainly accounts for a lot. After all, we base how we respond to others largely on what we see with our eyes, as well as the non-verbal cues we pick up on from them. Most of what we see when we look at another human being (apart from their hair, or lack of it, and their clothes of course) is their skin. We don't see their heart or their kidneys or their bones. We see their outer wrapping, their epidermis. Maybe that is why we care so much about what our skin looks like and maybe that is why so many prejudices, past and present, are based on the colour of people's skin. No matter how many times we may hear the advice that we should never judge a book by its cover, we still do. We judge others by how their skin looks (black, white, brown, freckled scarred, blemished or multi-toned) and we also respond emotionally to what we see when we look in the mirror. And how we feel about what we see affects the signals we send to others. If we are not happy in our own skin, then other people sense this and it adds to whatever perception they already have from looking at us.
Who do you think you are?
Not only is the colour and health of our skin influential in how others perceive us and how we feel about ourselves but it is also fundamental to who we believe we are. Our skin, like our hair and eye colour, is determined by our heredity. It is a highly visible proof of our genetic roots. It is one of the things that reminds us of where we came from and the family background we share with those we love. It can also be a reminder of shared culture and heritage. And, more than that, it is the part of us that we see every day of our lives and which ought not to change (beyond the fact that it may wrinkle with age or tan in the sun). So, when this supremely significant aspect of our appearance and identity suddenly alters for no apparent reason and begins to change from its uniform tone to a patchwork of colour and pure white, the sense of loss of self can be utterly overwhelming.
Vitiligo is not like other skin conditions
Why am I making this point in a vitiligo blog? Surely I am preaching to the converted. Well yes, I probably am. If you have vitiligo you know exactly what I am talking about. But maybe you are feeling as if no one understands what you are going through. Maybe you care about someone who has vitiligo and want a deeper understanding of its psychological effects. Or maybe you are a health professional who has stumbled across this page, in which case I hope it gives you an insight into why vitiligo is not just another skin condition. I am not minimising the distress that can result from other dermatological disorders - unsightly or itchy rashes, sores or dry skin. What I am saying is that vitiligo is different. It is a condition that can strike at the very core of who we feel ourselves to be. It can leave us reeling, wondering what unexplained and unexpected change in our fundamental appearance is going to occur next? Are we suddenly going to sprout an extra limb or a third ear or will we, like the hero of Kafka's The Metamorphosis, wake up one morning to find we have turned into a beetle?
My name is Caroline.