Re: Re: Problem (to Lizz)

[Guest guest]

Dear Lizz,

I am an adult with RSS (age 28). I know I am a bit older than you, but I'd sure

love to talk with you about what your going thru. I know what it's like to walk

in shoes like yours. We do have a site called RSS People, it is for

teens/adults with RSS. Or you can email me at beccawray95@....

Looking forward to hearing from you soon,

wrote:

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.

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