Hi Sarah and Heather,

I also have a form of SS. I am 43 and live in the Chicago area. I was
diagnosed with it when I was about 29 or 30 as I developed cataracts. I had a
cleft-palate when I was a baby. Wore my first pair of glasses when I was six
months old. The story goes they would try to take the glasses off and I would
cry. They would have to leave them on me till I went to sleep and then take
them
off.

I wear hearing aids due to hearing loss. I am legally blind in one eye, due
to it being lazy and was extremely myopic prior to the cataract surgery.
Knock on wood I have not had a retinal detachment. I do now have glaucoma. Had
the tubes put in when I was a child. I have very small ears and ear canals
and a small chin and no nasal bridge. I also have a very small mouth and when I
was a child they wanted to break my jaw because my back teeth didnt meet. I
have now years later learned that this is all part of the SS. The braces
helped. I wore them for 5 yrs and didnt have to have my jaw broken to correct.
However I still prefer softer foods as my jaw gets tired of eating foods that
require alot of chewing. My most recent battle is my knee I have had 3
cortisone shots in it this year and may be looking to have it scooped. I didnt
realize that my knee problems may now be linked to SS which I will need to
mention
to the Orthopedic Dr when I go back in Dec.

I have had my challenges growing up, being teased because of the bottle cap
glasses and my nose being diff and having a hearing loss. It didnt stop me as
I have my college diploma and have a very successful job. I am not married
and I have no children. Part of having no children is because I learned I had a
50/50 chance that I could pass it on and I would not want my child to go
through what I went through as a child. As an adult life is so different.
Children unfortunately can be very mean without realizing it.

I say for all of you that are parents with children with SS. I can only
suggest love them alot, teach them that "can't" isnt an option and help and
support them to be as independent as possible. There are alot of good wonderful
people out there.

Mary


[Non-text portions of this message have been removed]