history of crouzon syndrome

[JEANNIE L. BAKER]

DEAR SIR, I WAS BORN NOVEMBER 2,1956 WITH CROUZON SYNDROME I
WOULD LIKE TO KNOW MORE ABOUT IT, FROM A HISTOR ICAL AND
THEOLOGICAL POINT OF VIEW. I WOULD ALSO LIKE TO WHAT MEDICAL
JOURNALS OR ENCYCLOPEDIAS I MIGHT BE ABLE TO FIND IT UNDER . ALSO
,I PERSONALLY FEEL IT SHOULD TO ADDED TO THE MAINSTREAM HEALTH
ORGINIZATIONS, I FEEL IT SHOULD BE MORE ACCESSIBLE AND LESS HUSH
,HUSH !



SINCERELY YOURS, MRS. JEANNIE L.BAKER

[Erika Garcia]

I am a student at California State University, Stanislaus. I am researching the genetic disease Crouzon syndrome. I have found many facts about the disease itself, however I have been unable to locate any imformation about the history of the disease. I am especially interested in background imformation about Octave Crouzon, the French neurologist who first spoke of the disease.

[Judi L. Prince]

To whom it may Concern: I am a 32 yr. old woman born with Crouzon Syndrome. I also have a 9 yr. daughter with this condition. I would like to know why so many doctors are unaware of this condition? I have been misdiagnosed, assuming, that I have a thyroid disorder due to the buldging of my eyes....It's very frustrating having to educated physicians about my condition. Crouzons', as well as all other cranio-facial deformities, should be taught and explored more intently during their medical education...there are more of us out there than many people would like to think!!!

[Pamela Baker]

I was born on June 25th, 1966 with Crouzon Syndrome and had 12 surgeries. I am trying to find some info. on how to deal with pyschological issues of being teased growing up thinking that I am a "freak" still.

[Chris Hood]

Hi, I'm a 21 year old with Crouzons. I've had four major surgeries. I wish there was more information on this syndrome. I'm writing a college paper on it for my college Biology class and I just keep reading the same information over and over again. I also don't like how well-known heath websites label the physical appearance as "beak-nosed" and "frog faced". It's like someone is teasing me and it seems offensive to me. It seems like all the sites focus on the negative. This comes at a time when the Crouzon's support site is under construction.


I don't let things get me down. I know I've been through so much more than a lot of people who don't have the illness and that, what doesn't kill me, makes me stronger. I've learned to have a good attitude and through that, and since then, nobody has bothered me or teased me about it. I hope you all learn to have a good attitude as well. It does help.