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 :).
My name is Caroline.