Vitiligo sufferers support each other as never before
Advances in medical research may not have made a significant impact so far on the quality of life for people with #vitiligo, but advances in communications certainly have. In the past 5 years or so public awareness of vitiligo (or #leukoderma, as it is sometimes known) has become much greater, largely thanks to instant news, social media, online support groups and #vitiligoblogs.
Until the death of #MichaelJackson 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 even close to being as well recognised and understood by the public (not to mention the medical profession) 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 untimely death and bestowed 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 intoart. In fact, a real sense of community has developed online involving mutual support, sharing of experiences and a general accessibility of information about vitiligo 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 bring with it the ability for me to share my good fortune by putting my story online and to do a huge amount 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 am struck by the similarities, as well as some of the 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 my next post.
In the meantime, happy Valentine's Day to all!
My name is Caroline.