Re: 28 year old female with RSS

[Guest guest]

Hi , I'm . I am 27 yrs and have a 1 yr old RSS

daughter, Autumn (along with 2 older boys and a baby on the way).

Welcome to the group!

-Support , " beccawray95 " <beccawray95@y...> wrote:

>

>

>

> Hi everyone!

> My name is . I am a twenty -eight year old female who was

> diagnosed with Silver Syndrom at age one and a half. I

have

> had very little opportunity to network or visit with other persons

> and families affected by RSS.

> As I look over the different messages and photos you all have

posted

> I am amazed at the similarities of my own life. There are many

> struggles with RSS as a child, adolescent, and as an adult. I am

so

> thankful there is now a support system in place for children and

> familes.

> I am now four feet 9 and a half inches tall and weigh about 75

> pounds. I am small but mighty! I have a college degree in

> psychology, and spend my days doing counseling and case management

> for children and families.

> I would love to visit with other adults with RSS, but also would

> love to visit with parents or children. I would like to answer any

> questions or help in any way I can. I will try and post my

pictures

> soon!

> Hope to hear from you all soon!!

>

[Guest guest]

hi rebecca,

my name is cara my son is SGA although thought to be RSS until last july.

wellcome we love to hear others expearnces on there issues it helps to see

someone who has ben their. there are about 5 other adults that chat here as

well. and their is an adult rss group i although it is not quite as active as we

are here. i think it is called rsspeople but not for sure

again wellcome happy to have you

cara mom to jacob 8 SGA GHT peractin zertec zantac

beccawray95 wrote:

Hi everyone!

My name is . I am a twenty -eight year old female who was

diagnosed with Silver Syndrom at age one and a half. I have

had very little opportunity to network or visit with other persons

and families affected by RSS.

As I look over the different messages and photos you all have posted

I am amazed at the similarities of my own life. There are many

struggles with RSS as a child, adolescent, and as an adult. I am so

thankful there is now a support system in place for children and

familes.

I am now four feet 9 and a half inches tall and weigh about 75

pounds. I am small but mighty! I have a college degree in

psychology, and spend my days doing counseling and case management

for children and families.

I would love to visit with other adults with RSS, but also would

love to visit with parents or children. I would like to answer any

questions or help in any way I can. I will try and post my pictures

soon!

Hope to hear from you all soon!!

---------------------------------

[Guest guest]

Welcome and thank you for giving the parents

and children the opportunity to speak with you and ask

questions. There are few adults here on the listserve

and one of them will be able to tell you better about

the adult listserve.

My name is and my daugther who is 5

was diagnosed with RSS by a geneticist at 3 1/2 and an

endo in NJ (where we live) at age 4. We recently

visited with Dr. Harbison an endo in NY who is an

expert in RSS who just told us that she does not

diganosis RSS.

Where do you live ?

B

5 and Kelli 2 1/2

--- beccawray95 wrote:

>

>

>

> Hi everyone!

> My name is . I am a twenty -eight year old

> female who was

> diagnosed with Silver Syndrom at age one and

> a half. I have

> had very little opportunity to network or visit with

> other persons

> and families affected by RSS.

> As I look over the different messages and photos you

> all have posted

> I am amazed at the similarities of my own life.

> There are many

> struggles with RSS as a child, adolescent, and as an

> adult. I am so

> thankful there is now a support system in place for

> children and

> familes.

> I am now four feet 9 and a half inches tall and

> weigh about 75

> pounds. I am small but mighty! I have a college

> degree in

> psychology, and spend my days doing counseling and

> case management

> for children and families.

> I would love to visit with other adults with RSS,

> but also would

> love to visit with parents or children. I would

> like to answer any

> questions or help in any way I can. I will try and

> post my pictures

> soon!

> Hope to hear from you all soon!!

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

I am also an RSS adult -- a few months younger (I'll be 28 in April)

and an inch or two shorter (almost 4'8 " ), but a few pounds heavier

(~85lbs). I'm currently in graduate school in neuroscience --

someday I'd like to be a psychology professor.

Anyway, just wanted to say hi (looks like I'm awake before the rest

of the RSS adults!) and invite you to join the RSS-People yahoogroup,

which is only for adults with RSS (I think there are officially 30+

of us there).

-Ana

[Guest guest]

hey rebecca!!

welcome to our wonderful group!! its always nice to have annother

rss adult join the list and give us more insight into how their life

was and is!! there a couple of adults on this list and there is

also a list for just adults (sharon are you there, kim, hilary? they

can give you the info) do you belong to Magic? their website is

www.magicfoundation.org they could help you with networking with

others with rss as well, plus they have a convention in chicago

every july that is just awesome!! you can meet people from all over

the country and world even that have rss or children with rss!! you

should look into attending, you would have a great time!! where do

you live? let us know more about yourself as a child!! thanks,

looking forward to hearing more from you!!

jodie c. (one of 4 jodi's on the site)

(nicholas-6 1/2 nonrss, christopher-4 rss 27lbs 6oz 36 1/4 "

periactin 4.5, ght genotropin .5, assmentry(left side 1cm), ADHD/OCD

possible), johnathon-19m nonrss(just a terror lately, must be

terrible 2's early!!!!)

>

>

>

> Hi everyone!

> My name is . I am a twenty -eight year old female who was

> diagnosed with Silver Syndrom at age one and a half. I

have

> had very little opportunity to network or visit with other persons

> and families affected by RSS.

> As I look over the different messages and photos you all have

posted

> I am amazed at the similarities of my own life. There are many

> struggles with RSS as a child, adolescent, and as an adult. I am

so

> thankful there is now a support system in place for children and

> familes.

> I am now four feet 9 and a half inches tall and weigh about 75

> pounds. I am small but mighty! I have a college degree in

> psychology, and spend my days doing counseling and case management

> for children and families.

> I would love to visit with other adults with RSS, but also would

> love to visit with parents or children. I would like to answer

any

> questions or help in any way I can. I will try and post my

pictures

> soon!

> Hope to hear from you all soon!!

>

[Guest guest]

Welcome !

Just wanted to say hello and welcome you to the group! My name is Pat, and I

am g-ma to , who just turned 3 in Dec. We always appreciate any input

you (all the RSS sdults) can give!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

Hi !

My name is Sharon and I'm a 38y/o who has RSS. I'll actually be 39 in about a

month and a

half, but we can forget that part <wink>. I'm 4'6.75 " (but prefer to say 4'7 " )

and currently

hovering around 97# (I try for 94 and would LOVE to see 89 but I don't think my

" old lady "

metabolism [and being too lazy to exercise] will ever see THAT again). I wasn't

diagnosed

until I was 15 years old.

I'm married to Joe (age 32, 6' tall), who is a pharmacist for Walgreens and I am

an

occupational therapist who works in home health. No kids...just a 14.5y/o

mini-toy poodle

named Pippi.

Hope to see you around, both here and on the Adults' board!

-Sharon-

Just an RSS kid who grew up

Orlando FL

(originally from Staten Island NY)