I try my best to be discrete and cautious about what I post, not only because of privacy issues at hand, but because my husband and I have to sort of follow this "code of conduct" for the job he holds in the military.
However, I do think it's incredibly important that the public be made aware of ichthyosis, and that the parents and people who are affected by ichthyosis directly have an avenue of support and reflection and comparison. I chat with another mom who's child has Netherton's, and I can't tell you how amazingly helpful and relieving it was to see pictures of her daughter - and that goes for any other pictures of people with NS I've been sent or came across. Having no experience previously with Netherton's, and it being a VERY hard thing to google unless you have an MD (try looking it up - only medical articles! lol), I'd like to think that maybe a new mom with a kid with NS might come across Julia's pictures or the posts I make about her, and realize they CAN and DO have happy, fullfilling lives, and do just about everything other kids do.
Now, I'm a realist as well, and know there are a bunch of perverts and ill-intended people out there. And you can be sure that if I ever come across someone who used Julia's picture for anything BUT education OR "oh my gosh how cute is this kid!", they'll be sued until they have nothing but a cardboard box to live in for defamation and any other illegal thing our Army lawyer can come up with [img]http://www.ichthyosis.com/ubb/wink.gif
[/img] And for those I don't see doing it - well, I can't really help that. And while it bothers me that someone WOULD do that, it bothers me more that a parent or person with NS might be more confused and scared or alienated because they can't find the support they're looking for and need.
I don't necessarily want Julia to be a poster girl for NS - though I know lots of military wives and other people all across America who associate NS with Julia, just from the Bike Tour my friends did, the garage sale one of my other friends did to support FIRST, the information my friends give out to people, yada yada...I don't think it's a bad thing either. I sort of feel like - one more person who knows about it, is one less person who will ask Julia an infuriating or embarrassing or just plain annoying question in the future.
Boy I wish we could raise enough money to make a TV commercial in prime time TV! lol