Re: 28 year old female with RSS---Thank you !!

[Guest guest]

HI ,

Thank you for introducing yourself and welcoming me to this group. I live in

Wichita Kansas. I had the opportunity to visit New York City last year, and

would love to come back the NJ direction!! It's a great area!! I hope your

daughter is doing well. If she or you would like to ask any questions.

I remember the first time I had the chance to speak with another RSS child. I

was already 18, and I can't explain in words what that meant to me. I am so

glad that the children in your daughters age group with have that opporutnity

much sooner.

-RSS-age 28

Briggs wrote:

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!!

>

>

>

>

>

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