Re: Convention 05 Photo Album and the RSS/SGA Look

July 25, 2005

Ken,

We missed you and your family at Convention! Yes, I'll send you a

copy. The shot is even better than last year's...a bit more close up.

The group shot is a beautiful example of one of the slides

presented during our " Basics of RSS/SGA " presentation. No SGA/RSS

child is alike. Some children display more of the traits. Some only

display a few traits. Some look like " classic " RSS children. Others

may have squarer, rounder faces, indicative perhaps of SGA or UPD-7

positive children. And, very important: AS children get older,

their characteristics seem less pronounced: The head to body ratio

evens out, the pointy chin softens. Assymetry does not tend to get

worse; rather, the ratio of assymetry usually stays constant.

This information is important for those of you struggling with

finding a geneticist or ped endo to be committed to accurately

diagnosing your child. A physician with minimal experience with

RSS/SGA distinctions may be unlikely to diagnose a child who doesn't

demonstrate all the symptoms on a list. Perhaps if you walk in with

a group photo you can show your doctor that indeed, RSS/SGA is a very

varied syndrome! And, that's what makes it tough to diagnose and

treat. It requires an absolute " customized " approach to the doctor-

patient relationship!

Just so you know, 6 years ago, the head of the genetics department at

a leading Children's Hospital told us, " There is nothing you can do

for RSS. Come back to us when is 18 and we will re-evaluate

him " ). If it wasn't for the listserve (back then it was the MAGIC

listserve and Jodi Z.'s guidance, we would never have pursued

appropriate treatment).

Katy

> > Hi All...

> > I have created a photo album called " Convention 05 " . I made it

so

> > that any listserve member can add photos. If you do, take a

moment

> to

> > label the pics so that we know who/what we are looking at!

> >

> > (The folder is empty..I'll upload my photos later).

> >

> > Thanks,

> > Katy

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