Re: how common is RSS??

[Guest guest]

Grace-

I used to be the " old lady " of the RSS Adult group (I turned 39 about 2 weeks

ago) but then

Laurie T. had the audacity to kick me out of my reign...she's in her

early-to-mid 40's and

logs on here and there. We also have a member named (from the UK) who is

in his

mid-40's but he hasn't had internet access for a number of months.

I am positive there are MANY RSS adults in the world who still don't know they

have RSS. It

was only " discovered " in the mid-1950's and it wasn't until the 70's and 80's

that enough

doctors knew about it (since it's so rare) to be able to make a diagnosis. Heck,

for the first

15 years of my life, we all thought that since I came from a short family to

begin with, that

I was taking after Dad's side of the family, but to the extreme (woohoo! Sharon

the

Mutant!). And I'm sure if MY pediatrician didn't know what I had, there were

PLENTY others

in the 50's and 60's (and 40's an before) who didn't know either. Then once the

RSS kid

grows up, what's the chances that his/her non-pediatrician doctor is gonna know

the

person has RSS? Or even what RSS is? Pretty slim, I'd say. MY general practioner

didn't have

a clue...I had to give him the blue handout...which he promptly put in my

folder, never to

be looked at again...he thinks I didn't notice <wink>.

So that's my LONG-winded way of saying that I've been 39 for 2 weeks and if your

son has

any questions from yet another RSS woman, here I am.

-Sharon-

Orlando FL

Just an RSS kid who grew up

> im wondering what the oldest person with rss is known to date ..my son is now

22 and i

would like to meet others his age and ask their advice about coping with rss.

thanks grace