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

[Guest guest]

Hey sharon I totally echo your post. i was hurt when know one bothered to tape

our panel,except me.as the parents seemed to find our segment so

moving,honest,humorous and informative without all the medical jargon or endless

advice about the decisions they make for their own kids. it does seem to me that

some people in rss division forget that as adults we know more about life/living

with rss than any medic!!!!! But maybe as we did not take gh that doesnt help

some parents, although i had a few parents asking me about the possibilities of

not using gh on their child although dr harbison strongly recomended it /also

feeding tubes when the child was doing just fine ,if not as big as a 'normal'

child should be. I have some issues with dr harbison attitude which i have

discussed privately with sharon. Although i appreciate that dr h and dr stanhope

etc where very busy at the convention i was surprised and vexed and hurt, that

nobdy took the opportunity to speak to any of us adults to ask

us about life with rss in adulthood without ght etc as this treatment is not

the be all and end all or the 'cure' for rss and i thought that as there were 7

adults that the docs would have been walking over hot coals to get first hand

knowledge of living with rss from us as we are the future for your kids(with or

with out ght,feeding tubes etc) i will be renewing my membership to magic but

i too feel 'shortchanged as it were' as magic dont seem to take much notice of

rss adults or help us. we could prove to be an invaluable resource for the rss

kids of today. I am hoping to attend chicago this year and as much i as i gained

from meeting the rss adults(what a privellege) maybe it will prove to be more

advantageous for all attanding than the, rss adults v everyone else in the

division.for example, had us rss adults not met and chatted informally we would

not have discovered that many of us have a similar health issue that is not even

mentioned by the medical rss experts and we would

like more research into this finding as it may prove extremley useful for the

parents of young rss kids as only rss adults have discovered this possible

unrecognised rss characteristic. Sorry this post was ssooooo long but sometimes

i as others in the rss adults section get really frustrated and need to get our

feeling out as we have no doctors specifically for us to talk to.

sharonkurland wrote:

Hi -

" Why isn't there an RSS Adult division of MAGIC " is something that already was

discussed

amongst us adults not very long ago (less than 2 months?). Hillary and Steph,

who have

been involved with MAGIC a lot longer than the rest of us and have a more

" leader " role on

the RSS-People board both said pretty much the same thing you did...if we want

to have

that division, we have to make it ourselves. Which makes absolute sense...it

would be FOR

us, so it should come FROM us. However to date, no one, myself included, has

volunteered

to step forward. And if that's what we want, or in this case, DON'T want to do,

that's the

way it is and life goes on, But I just feel...looked over, maybe?

unheard?...when MAGIC is

willing to take our membership dues but can't even tell us " your membership is

really

helping the kids and won't have a whole lot to do with you, because you're not a

kid

anymore. " Or couldn't even be bothered to videotape our segment at the 2004

convention,

which I think hurt the most of all. Granted, us adults are no Dr. Harbison or

Stanhope but

if our topic was interesting enough to have all those caregivers come to our

segment, why

couldn't we have been videotaped too, so other caregivers could have the

opportunity to

learn what we had to say, if they so wished?

I know that my self-imposed role with the parents here on the boards is to be

the " words

of wisdom, " as an RSS kid who grew up. And I've gotten more than my share of

thanks

from the parents, in person, on the boards, and in email...so I'm not whining

about that at

all. But I got my MAGIC membership as a way to help ME because I have RSS...not

as a way

to to give $30 to a charitable organization who, although very dedicated to its

children,

doesn't give me, as an RSS adult, a whole lot in return.

Please don't get me wrong...I'm not majorly upset about this or anything...it

won't stop me

from renewing my membership or going to the convention in '05...but I just felt

I needed

to get it off my chest.

[Guest guest]

hi danielle,thanks for posting and i'm glad hat the rss adults can help. i

actually have a load of health issues but not sure if rss related. I couldnt

take gh either as it was not the same as today. I do not object to parents

choosing to use ght but i hope they feel that they have a choice and not feel

pressured by any one on what route they choose for their child, i must say if i

had an rss child who was a boy i would certainly be more inclined to look into

ght as being a short male and pose more stigma/social issues than for women.

anyway thats it for now, i hope i havent offended anyone but i just want people

to see being short is not the end of the world and if your child is

happy,relatively healthy but just small maybe trying to make them 'normal

height' isnt a big deal (sorry about punn he he) as we have shown you can be

small but big in society.

le wrote:

Hi,

I feel like I need to share a couple of thoughts with you.

Most importantly my first comments are to the adults with RSS. I

think that all that I have seen and and met at the conventions are

fabulous!!! I have been to both adult session the past 2 years and

they have been the highlight of my weekend. You give me hope and

relief of the future for my son. You are all so funny and I love

hearing your thoughts and feelings. I wanted to let you know that I

appriciate you being at the convetion each year and I trully hope

you continue coming back in the future. It will not be the same

without you.

As for the debate on growth hormone, I think everyone has the right

to their opinion. With my child that has rss being a twin it makes

my choices different. Just as everyone has a unique situation and

which makes all of our choices different. You never know what you

would do in someone else's shoes because you are not in them. As a

parent I research the information that I have available at that time

and make the most informed dession I can with that information.

That is all that we can do. We don't know what they will discover

tomorrow. We do the best we can. I have 2 children that could

receive ght and I have made a individual dession to only start one

of my children on ght. Like others have said, there are other

reasons for growth hormone then just height. Coming from a short

person, being short is cool, but you have to be healthy as well.

It's an individual choice and I don't believe that either choice is

right or wrong or that anyone is bad or good for the choice they

make. We as parents make choices everyday that will effect our

children for the rest of thier lives and we do it to the best of our

abilities. We can't look back in judge our choices. It is what it

is.

le, mom to:

Shye 10, Brock 8, and Coby(rss) & Carlee 2