Thanks to everyone that pm me and bumping for more to read!

"Can someone with Crouzon Syndrome live a 'normal' life?"

Contributed by Thomas Head (tlh@netdoor.com)

I'm always intrigued by the "normal life" question. It's one that I'd asked myself a little when I was growing up, but didn't really put much thought into answering until I encountered other folks who have Crouzon Syndrome. It occured to me that so much of our lives revolves around appearance...and linear standards of attractiveness vs. unattractiveness aside, one thing's pretty much for certain: people who have Crouzon Syndrome, no matter how much surgery they've had, will look like people who have Crouzon Syndrome. Period. There's no getting around this. That doesn't mean we'll be "ugly", and that doesn't even mean that our faces necessarily demand explanations. It just means that we're never going to look like Mel Gibson or Barbra Streisand, because Mel Gibson and Barbra Streisand don't have Crouzon Syndrome. In other words, what I've got affects my face. It changes the way I look. I can make the most of it, I can apologize for it, and I can have surgery on it -- but it ain't going anywhere.

So to those of you who are miserable if you don't look just like your average fine looking actor/actress, become your own fine looking actor/actress. You'll have to develop your personal style, at least until exophthalmos becomes gothic chic and people start creating it surgically to be fashionable, but facial differences have more to them than "ugliness". How do you think facial piercings looked until people "started looking good" (?) with them?

Oh, and toss away all that crap you read from plastic surgeons about self-esteem. They have every reason to be concerned about our self-esteem; that's where they get their paychecks!

One more thing: you have no reason to feel guilty about handing down Crouzon Syndrome. People have every right to have kids. There are folks with potentially fatal physical conditions who hand them down all the time. Eugenics is unfashionable, and for very good reason. Remember that half the cases of Crouzon represent fresh mutations, and the general consensus seems to be that it's better, as a kid, to have people in the family who've already been through what you have.

Be yourself. You're sure as hell not going to be anybody else...and why would you want to?

Praying.....

I will pray for your sister.

Let her know that their is someone for everyone out here.
I'm 32 and feel that I will never find my prince charming, but I know God has my life partner out there waiting to meet me, so I am just waiting until he finds me.

WIll PM you for her address.

You never know how strong you are until being strong is the only choice you have.

Id love to send her a card

Oh I would love to send your sister some stickers and a card.

Brenda - SHE IS SOOOOO BEAUTIFUL! and I am not just saying that she really is very very pretty. She is right though, people who are "different" or "not normal" are treated differently and that is so sad.

I feel sorry for anyone who don't give people with handicaps the time of day because it is their loss. I bet she is the kindest person, and I WISH I lived closer, because honestly, I need a friend! I am sure she would be the best!

I am going to PM you for her address.

I think she is beautiful. Kt is sitting here with me and she says "Her's pretty."

Will PM you for address. I want to send a card and so does Kt.

Thanks everyone for all the kind words and thoughts and prayers! They truly mean a lot!

I have a sister with special needs, and a son too.

I would love to send you sister a card & stickers!

Wow I just found this thread. I am praying for your sister. I have met her and she is so sweet and very kind, I pray her spirit comes back to her and that she gets some peace.