Re: Re: RSS/SGA Convention - RSS Adults-VERY LONG-Sharon

[Guest guest]

Hey sharon thanks for answering emails as i've not been near the computer for a

few days,(and you took the notes at the rss adults sessions) It would be really

positive if someone one look into these issues but as you said the docs aren't

focussing on issues that are not immediate with rss kids. I am one of the adults

with 'womens problems' and i thought i was alone and it was an extra problem i

had but since meeting other rss women it has helped me think maybe it is rss

related, had us adults not got together and chatted(alot as you pointed out) no

one would know about these and other isssues that rss kids may face in the

future that no one is aware of because of no adult rss research.

anderkat3 wrote:

Sharon,

That is pretty interesting to know. I will keep all this info in

mind with my daughter, almost a year. All I ever hear about her from

the docs is 'growth' issues and 'weight' issues, nothing else. This

kind of info should be looked into. It's good having female adults

with RSS here. Thank you for all the info you share.

mom of Autumn RSS 1 yr next week!

> > Kim what is this, " only rss adults have discovered this

possible

> > unrecognized rss characteristic. " you are talking about, I would

like to

> > know. My son is 3 and on periactin, no ght, and I don't know what

I will do

> > about that in the future, Torn. What unrecognized characteristic

are you

> > talking about?

>

> Debbie-

>

> When the RSS adults (all female) got together in Chicago last year,

we started talking a

> LOT. Topics seguayed from one to another and we discovered that

several of us had one

> or more gynecological issues, i.e. tipped/tilted uterus, lack of

uterus, etc. I don't recall

> ever reading about that as a symptom of RSS, but then again,

virtually all information

> about the syndrome is about kids, so it's not surprising that this

possible new information

> had never been noted before, since who would be looking at a little

RSS girl's reproductive

> system? <wink>

>

> -Sharon-

> Just an RSS kid who grew up

> Orlando FL