Re: Re: Check out ICH Slides Collection -

November 17, 2004

Hi ,

I, too, was bothered by that site. So much so that I actually emailed the

library it came from and suggested that they either caption the pictures, or

balance the site with some less involved children. I would hate for a parent

of a newly diagnosed RSS child to run across that site, see only those

pictures, and think that is what is in store for their child!

I think the child with the bump in his back was an example of scoliosis. But

like you, I've never see a child as involved as that poor little guy. It

seems like they also picked children with severe examples of asymmetry too!

Pat (g-ma to , RSS, 34 months, 23.9#, 32.2 " , G-Tube)

November 17, 2004

I actually wrote a letter to the website as well. I checked out some of the

other pictures to see if it was just the RSS section that was disturbing, and I

found that many of the other pictures for the other disorders were equally as

exploitative in their feel. I'm not even sure that the pictures of the

achondroplasia subjects even have achondroplasia (although, I'm certainly no

geneticist). I was most disturbed, as many of you were/are, that the children

were completely naked. I feel, and also wrote in my letter to the owners of

the site, that there is no justifiable reason why these children should, at the

very least, not be wearing underwear. I strongly feel, and I also put this in

the letter, that displays such as this only encourage medical professionals to

disassociate from their patients and view them as medical rarities, rather than

humanbeings. I cannot recount the number of times that doctors and other

medical personnel, upon learing that I had something that they had only read

about, asked if they could bring in their colleagues. My parents always

refused, but I do remember a few times when they did it without asking and how

degrading it felt (and how mad my parents were). Anyway, I'm getting far, far

off the point here , so I'll end now before I manage to write a novel .

~Hillary

22, RSS

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