Friday, June 26, 2009

Angry About the Michael Jackson News Coverage and a Lost Opportunity

So, I'm in the middle of what are normally the three busiest weeks of the year for my job. Tomorrow a large conference event I run takes place, so I'm in Washington, DC, running around trying to get everything taken care of.

But every chance I've had I've turned on the TV or read news stories on my cell phone, hoping that somebody would take the opportunity to talk about Vitiligo and the likelihood that Michael Jackson actually had Vitiligo and that it would possibly explain the bleaching of his skin... that somebody would actually understand how debilitating Vitiligo can be, take this aspect of his life seriously, and acknowledge the pain that Michael and others with Vitiligo go through. I know there are many other controversial things to talk about regarding MJ, but I have not once heard the word Vitiligo mentioned in any story today--a story which could actually have substance and help others. How can that be?

I have Vitiligo. I'm light-skinned, and I developed it after I was married--so it's impact on me could be considered gentle compared to how emotionally debilitating it can be to those with darker skin for whom personal appearance--especially facial appearance--is much more socially critical. (The photo in this blog post is of Lee Thomas, an Emmy Award-winning TV broadcaster with Vitiligo who uses makeup to cover up his Vitiligo, and who has written a book called Turning White.) I run a growing social network for those with Vitiligo, and this immune disorder, which affects some 1 - 2% of the population, can tear at the hearts of those who have it.

I'm hoping that one of the Vitiligo research organizations has issued or will issue a press release at this time, at least giving some basic information about Vitiligo and shedding some light on what those with Vitiligo go through. I just did a Google search and it appears that MJ originally announced on Oprah that he had Vitiligo--seems like this would be a good story for her. Anyone have any connections?