Hi there,
I know how you feel, i to am here in Australia, and it feels as though we are
the only ones, can be difficult at times.
I have a 4 year old daughter, who has PRS/SS, but seems to suffer in a
completely different way to anyone else, would be great to chat sometime.
Lisa
By the way we are in Sydney

fire_n_ice_1970 <blondie1170@...> wrote:
Hi everyone,
I'm a 35 yr old mum of a 15 yr old with PRS/SS and I also have
PRS/SS. I'm the past 12 mths I've had both hips and both knees
replaced due to osteoarthritis and my son has had a bone graft and
titanium rods put in his back due to kyphosis/scoliosis which was only
diagnosed 2 yrs ago. I have been looking around to talk to other
families going through similar things to me but it seems all the
families on here are from overseas where it seems things are done
differently to us over here(australia).
I was diagnosed as a young child and my son was diagnosed at 3 mths of
age. We both have type 1. We both have problems with our ears, eyes
and joints.






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