Last Updated on 20th February 2020 by Caroline Haye
Happy birthday: but not too many happy returns of the day!
It only seems like a couple of years since I first heard of it. But World Vitiligo Day is 4 years old today. The brainchild of Steve Haragdon, who founded #VitiligoFriends, and Ogo Maduewesi, founder of #VITSAF, #25June is now firmly established on the social media calendar as a day to focus global attention on a skin disorder which is still poorly understood by the public at large and even by much of the medical profession. The aims of World Vitiligo Day include having the date recognised by the United Nations and are described on the official website as follows:
The ambitious goal of 25June Initiative is to mark World Vitiligo Day on June 25, a date to be observed annually by the United Nations. Longer term, the 25June Initiative aims to generate knowledge of vitiligo, its appropriate care, arrest and treatment methods amongst the general public, health care providers, and governments.
25June.org
This year we aim to raise 500,000 signatures to address the United Nations in order to:
- Recognize this neglected and debilitating disease associated with severe social complications;
- Recognize the urgent need to pursue multilateral efforts in therapy development and health-care education;
- Designate June 25 as the World Vitiligo Day to be observed by the United Nations and Member States every year.
Recognition is the first step for the prevention, better treatment and care of vitiligo in line with the sustainable development of national health-care systems.
If you have not yet signed the #petition (and it’s wonderful to know that 487,332 of the targeted 500,000 already have) please do it now. If you are not someone who usually signs petitions, I urge you to at least read the petition letter anyway. It eloquently and movingly makes its case and I believe you will be glad you read it, whether you choose to sign your name or not.
The sad fact is that, despite the publicity surrounding the late #MichaelJackson’sVitiligo, and in whose honour the World Vitiligo Day date was chosen, many of the 100 million plus vitiligo sufferers worldwide still face ignorance, superstition and social exclusion for no other reason than the patchy appearance of their skin. But the good news is that, year by year, thanks to World Vitiligo Day and also to the daily efforts of many support groups and individuals around the world, awareness and understanding of vitiligo is spreading. The success of these efforts is largely down to the reach of the internet and social media and, happily, this trend can only continue to accelerate.
So, I have to wonder where we will be on June 25th another four years on. Let us hope that, by then, a universal awareness of what vitiligo is (and isn’t) and how it affects those who live with it will have made life a lot simpler and less stressful for everyone affected by the condition. Or, even better, by 25th June 2019 it is entirely possible that advances in medical research will mean that living with vitiligo has become a thing of the past. So, my message today is “Happy Birthday, World Vitiligo Day – but let us hope not too many happy returns!”
