Problem

[Guest guest]

My name is Lizz and im 16.I havent found many sites about RSS.

When I was born they said I had an off shoot off RSS, Im only missing

the curved finger.I didnt know I was a dwarf till I was 14 when I

relized Id been 4,5 for the last 4 yrs.I don't know if I should

forgive my parents for never telling me.

[Guest guest]

Lizz,

I'm sorry to hear that you are just finding out about your medical

situation. This is why we are very honest with our children about our 3 1/2

year

olds RSS. She knows she's different and she's ok with it for now. Wish i could

give you some advice but i really don't know how you feel.

Again sorry,

Chrissy

Mom to

Louis 6, Madison 3 1/2 RSS, Shane 20 months, 7 months

[Guest guest]

HI Lizz,

I'm sorry your parents never told you, that was a choice they felt they had to

make. I would try your best not to be upset with them, they were trying to

protect you. There are a few really good sites about SRS, I did a research paper

on it a few years ago. Are you technically a dwarf? Midgets are simply normally

proportioned small people, whereas dwarfs are not as normally proportioned. I'm

22 and 4'8''. As long as your healthy I would try and accept things, it's not

anything your parents could have prevented, although personally I believe they

should have told you. being short isn't as bad as people make it out to be, guys

seem to like smaller girls anyways lol. best of luck and if you have any

questions this group is amazing and will try to answer all of them as well as

they possibly can = )

*leah*

behemothdragon wrote:

My name is Lizz and im 16.I havent found many sites about RSS.

When I was born they said I had an off shoot off RSS, Im only missing

the curved finger.I didnt know I was a dwarf till I was 14 when I

relized Id been 4,5 for the last 4 yrs.I don't know if I should

forgive my parents for never telling me.

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

[Guest guest]

Hi Lizz!

My name is , I'm mom to (5) and Emerence (2). Did you

know there is a teen/adult support group too - I think it is called RSS

People. I am sorry you are going through this. I don't think that

holding it against your parents will help but it does sound like you

should sit down and really talk with them.

Even today there are parents on this list serve who have gone several

years with no direction as the doctors do not know where to point them

or do not diagnose them correctly. Your parents may have been told

that and nothing more - the MAGIC foundation is only about 10 - 15

years old and until the internet became popular it probably grew only

by word of mouth.

Also, there are some parents that choose growth hormone therapy and

some that do not. Sometimes the insurance company dictates this as our

insurance company, Blue Cross Blue Shield of Mass., only adopted growth

hormone therapy in the past few years. My understanding is that it can

be $30,000 a year without insurance.

Have you asked your parents why they didn't tell you? Maybe they

thought " labelling " you would be worse? Unfortunately as parents we

arent' perfect...sometimes we think we are doing the right thing and

later it may not seem as though we made the best choice for our child.

My own example...when Emerence was about 4 or 5 months old I took her

to the Dr. with a cold...I just felt something was wrong/more than a

simple cold but he brushed me off and told me " this was a time I

shouldn't have brought my daughter in " ...the next 2 days she was worse

and I waited thinking about what the doctor said and just feeling like

a silly mom...then I brought her back on the 2nd day and by then she

had bronchiolitus and has had to use a nebulizer for asthma ever

since. I feel guilty that I did that to her by waiting but I can't

change that.

My thoughts would be to talk to y our parents, join the RSS ADults

group - have you thought of coming to the convention in Chicago in

July? Usually there are a few other teens/adults that come...also where

are you from?

, mom to , 5 and Emerence 2 RSS/SGA 27 mo. 31 " 21 lb

> My name is Lizz and im 16.I havent found many sites about RSS.

> When I was born they said I had an off shoot off RSS, Im only missing

> the curved finger.I didnt know I was a dwarf till I was 14 when I

> relized Id been 4,5 for the last 4 yrs.I don't know if I should

> forgive my parents for never telling me.

[Guest guest]

Lizz,

My son Max is 16, soon to be 17, and has RSS. He would love to

correspond with you. His email address is maxzoid88 @hotmail.com.

BTW, Max is now 5'3 " and weighs about 114 pounds. He knows about RSS

and can be of help to you. He's been on growth hormones since he was

almost 3.

Jodi Z

[Guest guest]

Hi Lizz,

You have come to the right place. There are a lot of great people

here who will be very happy to talk to you.

I don't know why your parents didn't tell you about it. I also

don't know what they were told by the doctor who diagnosed you. I

think you need to sit down and talk to them. Find out all of the

information that they received at the time and what they were told.

And then forgive them. Whatever decisions they made, were made in

your best interest whether you agree with their decisions or not.

It is not the choice that I would make for my child, but I am not

them.

Good luck,

Judith, Steve, (RSS) and (non RSS) 5 year old twins

> My name is Lizz and im 16.I havent found many sites about RSS.

> When I was born they said I had an off shoot off RSS, Im only

missing

> the curved finger.I didnt know I was a dwarf till I was 14 when I

> relized Id been 4,5 for the last 4 yrs.I don't know if I should

> forgive my parents for never telling me.

[Guest guest]

I'm sure they didn't mean to hurt you by not telling you. They were probably

worried about how you would react. More than likely they just wanted you to grow

up normally and thought maybe you wouldn't if you thought you were different

from everyone else.

Tonya mom to Aubrey

behemothdragon wrote:

My name is Lizz and im 16.I havent found many sites about RSS.

When I was born they said I had an off shoot off RSS, Im only missing

the curved finger.I didnt know I was a dwarf till I was 14 when I

relized Id been 4,5 for the last 4 yrs.I don't know if I should

forgive my parents for never telling me.

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

[Guest guest]

Hi Lizz,

I am so sorry that you are feeling the way you are. I can tell you

without hesitation that your parents where doing waht they thought was

best for you. Maybe they didn't get a lot of information on it, and

they may have been misguided, or told something that scared them and

didn't know what to say or how to say it. Obviously they knew you were

going to be okay, though.

Don't be mad at your parents, but I am with everyone else. I think you

should discuss this with them and ask them why they didn't tell you

sooner. It is no secret in our family about 's RSS. We just

don't let it be a crutch for him. He gets no special treatment around

here! LOL. He still has to pick up his toys! Ha, ha. I love

for who he is. And, he wouldn't be the same without the RSS. I am

sure your parents feel the same way. You have done well so far, and

you will continue to do well. At this point, it is just medical

information that is important to have.

Hope all is well and everything goes well with your parents,

Jodi R.

> My name is Lizz and im 16.I havent found many sites about RSS.

> When I was born they said I had an off shoot off RSS, Im only missing

> the curved finger.I didnt know I was a dwarf till I was 14 when I

> relized Id been 4,5 for the last 4 yrs.I don't know if I should

> forgive my parents for never telling me.