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Old 07-24-2004, 04:03 PM   #1
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prs_15_af HB User
Arrow My Problem...

[COLOR=Magenta]Hi my name is amanda im 15 yrs old i have pierre robin syndrome which means i have a high cleft palet it enables me to talk normally like normal teens my age i wish i didnt have this disease i hate having to talk to people i dont know because im very shy and afriad that they will make fun of me it suck because for 15 yrs or sence i learn to talk when i got a bet older i heard my voice if u got similer or if u have prs msg me please!!! because i would love to talk to someone who shares the same problem and to know im not the only one who has prs or feels the same way scared and alone [COLOR]

 
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Old 07-25-2004, 12:45 PM   #2
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zuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB Userzuzu8 HB User
Re: My Problem...

Amanda dear,

I would suggest two things. First, try posting on this site's Rare Disorders Board. I wouldn't be surprised if you get a lot of "hits" there.
Also you might want to do a websearch for an organization called the Pierre Robin Network.
Don't be scared. You are most definitely not alone. It's just a question of reaching out, like you are here, and making contact with others who share the same problem. You'll find a lot of comfort when that happens...and it will...

Good luck,

zuzu xxx

 
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