--- In sticklersyndrome@yahoogroups.com, "cales_mom" <gressman1@m...>
wrote:
> Hi group~
> Well, once again, I am fairly new here but the vetrans of this
group
> have made me feel so overly welcome here that I am now coming to
you
> with a very personal question and am just looking for any and all
> feedback that some of you may have.
>
Hi! I am new here. My name is Heather & I along with my two
daughters have stickler-syndrome. We just found out a little over a
year ago that is what we have. My first daughter Kayla(10) was born
with what we thought was a cleft-palate only. Then 16 months later I
had my 2nd daughter. She had the cleft & Pierre-Robin. We did the
trach,& G-tube thing has well. She also has severe acid reflux. So
she had to have a nissan done. I had my third daughter in 99. She
is fine. But in 2003 at a Cleft-Palate appointment a genetist
finally decided to talk to us. Well I have arthritis. Have had 6
Retinal detachments & am very near-sighted. I can't believe at 29
how much my joints hurt. All the time. Makes me worry for my
girls. My 8 year old alreay has some osteoarthritis. Would love to
hear from some of you.