Last Updated on 29th November 2022 by Caroline Haye
This great photo courtesy of www.vitfriends.org/
Online support
Advances in medical research may not have made a massive impact yet on the lives of people with vitiligo. But advances in communications certainly have. In the past few years public awareness of vitiligo (or leukoderma, as it is sometimes known) has become much greater. And, thanks to instant news, social media, online support groups and vitiligo blogs, a real sense of vitiligo community has emerged.
Until the death of Michael Jackson in 2009, very few people had even heard of vitiligo unless they, or someone close to them, actually had the condition themselves. Of course, it is still not as well recognised and understood as more common skin conditions like eczema and psoriasis. But MJ’s vitiligo was something that gradually filtered into the public consciousness in the aftermath of his death. And it gave vitiligo sufferers everywhere a bizarre kind of credibility – a celebrity endorsement of the condition, as it were. Since then many vitiligo sufferers have felt more secure about “coming out” on social media and showing off their white patches… Some even turning them into art.
Camaraderie through technology
In fact, a kind of camaraderie has developed online, involving mutual support, sharing of experiences and a general accessibility of information about vitiligo. And all of this to an extent that I would never have thought possible when I was a young woman hiding my white patches from the world and feeling very alone.
It just so happened that this enlightened era of community and communication dawned at about the same time as I was actually recovering from vitiligo. (My repigmentation started in the Spring of 2010). So, in a way, you could say that it came along at a time when I no longer needed the encouragement and emotional support myself. However, it did give me a way of sharing my good fortune by putting my vitiligo success story online. And it enabled me to do a lot of online research into the causes, effects and treatments of vitiligo… Both for my own interest and to pass the information on via my blog and via direct communication with my many vitiligo friends. So I am very grateful for the technology that has made this possible.
During this time, I have also enjoyed reading some of the other vitiligo blogs that have gradually started to appear. And I am struck by the similarities, as well as a few differences, between the views and experiences of these other bloggers and my own. This opens up quite a big topic, which I would like to expand on, so please keep watching this space and I will pick up on it in a future post.
In the meantime, big hugs to all my vitiligo friends!
