I share op's feeling. At least on that image the skin looks very raw, like it has been peeled or burned off. It absolutely does not look normal and can be disturbing to unexpecting observers (me included). If it was normal there would be no post about it.
Looks don't mean much about a person and I am sure she is nice. No one should be ridiculed for their looks. But please have some sympathy with people who feel uneasy looking at diseases (not a native speaker, probably the wrong term).
The image IS disturbing to me. You cannot project your own feelings on me. She looks very alien, like sun-burnt at a high degree and it made me queasy. I am not ashamed of my weakness here but I wanted to warn others.
This has nothing to do with growing up. I feel uncomfortable seeing someone with such condition. I also cannot watch America's Funniest Home Videos where people get hurt constantly.
edit: Dear downvoters, I found that image disturbing and wish I had not seen it. I am sorry if this offends the person depicted but it is the truth.