Comments for Broken Butterfly- A Crouzon syndrome survivor's blog http://candar.wordpress.com Just a diary about life and going through reconstructive plastic surgery Wed, 04 Nov 2009 20:39:59 +0000 http://wordpress.com/ hourly 1 Comment on My surgery by I Am Me And Proud http://candar.wordpress.com/about/#comment-3067 I Am Me And Proud Wed, 04 Nov 2009 20:39:59 +0000 #comment-3067 Hi this is such an interesting blog. I too have got crouzons syndrome and after nearly 16 years of living with it i do not really mind. I too was also bullied a bit at school and was the main target of the big bullies in my year in secondary school. But now as i am in my last year and am so happy to say the rest of my classmates and especially my friends treat me just the same as anyone else. To be honest now when people laugh at me or call me names because i am different i just reply with " You laugh at me because im different? Well i laugh at you cause youre all the same" It usually shuts them up. Aniway i know im ranting on a bit but my main message is i too used to cry and felt upset at myself for having this but have now realised that as they say its whats on the inside that counts and also god made me different for a reason and that reason was to SHINE!!! Also i think people need to stop being so shallow and close minded and realise that what some one looks like is not the most important thing. I was born this way and i wouldnt change it for the world. By the way you look great you go girl!!! Hi this is such an interesting blog. I too have got crouzons syndrome and after nearly 16 years of living with it i do not really mind. I too was also bullied a bit at school and was the main target of the big bullies in my year in secondary school. But now as i am in my last year and am so happy to say the rest of my classmates and especially my friends treat me just the same as anyone else. To be honest now when people laugh at me or call me names because i am different i just reply with ” You laugh at me because im different? Well i laugh at you cause youre all the same” It usually shuts them up. Aniway i know im ranting on a bit but my main message is i too used to cry and felt upset at myself for having this but have now realised that as they say its whats on the inside that counts and also god made me different for a reason and that reason was to SHINE!!! Also i think people need to stop being so shallow and close minded and realise that what some one looks like is not the most important thing. I was born this way and i wouldnt change it for the world.

By the way you look great you go girl!!!

]]> Comment on Guess what? by marjolein http://candar.wordpress.com/2009/08/11/guess-what/#comment-3060 marjolein Sat, 24 Oct 2009 20:51:49 +0000 http://candar.wordpress.com/?p=97#comment-3060 really beautiful! really beautiful!

]]> Comment on One month post op photos by viki http://candar.wordpress.com/2007/10/10/one-month-post-op/#comment-3058 viki Thu, 22 Oct 2009 00:39:33 +0000 http://candar.wordpress.com/2007/10/10/one-month-post-op/#comment-3058 Im happy that people like you make a bolgs about maxilofacial and craniofacial syndrome.Im a one who have deformation(plagiocephaly) and I m proud of you,because Im not so faith (people are so cruel).you have made big think and hope for others!!! GOD BLESS YOU!!!!sorry for my english:( I wont wish you everythink what you could imaged :* Im happy that people like you make a bolgs about maxilofacial and craniofacial syndrome.Im a one who have deformation(plagiocephaly) and I m proud of you,because Im not so faith (people are so cruel).you have made big think and hope for others!!! GOD BLESS YOU!!!!sorry for my english:( I wont wish you everythink what you could imaged :*

]]> Comment on My surgery by charming guy http://candar.wordpress.com/about/#comment-3057 charming guy Wed, 21 Oct 2009 21:32:13 +0000 #comment-3057 HI.. well i found this blog by chance..sorry for my poor english. Basically, I am also suffering from this syndrome but in my case as far as i know i did not do any of the major surgeries that i have read here except i remember one for the nose for snoring and respiration problem..besides that i did not do any more surgery.. well, My childhood was similar to yours, loved by frnds and families..overprotection..and also constant bullying by other people..It does break your heart when other people laugh at you..some openly some behind your back and it does need all the courage and strength to keep on moving with life.. From my appearance, i was underestimated,,people had biased opinion about me etc etc.. However what i only did was to prove them wrong!! And I have been doing that till now.. In school, college..I was underestimated by everyone..even teachers refused to have me in their class and already said that i would fail..and the result was that I was always among the most intelligent guy around..and proudly today am a student at the university,22yrs male and still going strong thanks of course to GOD. TOday i have won the respect of everybody..The teachers that once said i would fail now say am very intelligent, my lecturers are proud of me..FRnds love me..by love i do not mean pity..they truly does..and this what i wanted to say..despite all appearance, your personaliTy does play a great part..I can say by the grace of god..i have achieved great things that a normal people cannot do.. Just to mention I had been accepted for medical studies in 4 universties in france, accepted in my country also..though now am doing engineering studies..all this to stress that whatever comes in our way we need to keep on moving.. Today even at the university, some people have bizarre reaction upon seeing me..and honestly i wud say it is normal!! but after knowing me..they are really nice..of course there are exception to that rule..and we should not care about that!! Today am known for my intelligence, motivated guy, charming, the popular type,always smiling and having good sense of humour!! frnd always like my presence and i am always wanted everywhere I go.. I am pleased to share some bits and pieces of my life..and i only want to say not to desperate in life..we are what we are..appearance like many would say do not count..but it does in the world we are living!! BUT, its true we are not like everybody in appearance and we have to accept this fact!! However we can show the world that we also can compete with the best, we can be better than others and that what I have been doing and by the grace of god..I have suceeded till now. Finally i wanted some advice if I can say it like that..How people like us deal with love life?? i mean dating and others..?? In this matter, I am very poor and help concerning how to approach someone you love etc would be much appreciated..Once again sorry for my bad english( though i obtained distinction in that subject!! LOL maybe the "chat effect" XD) Aniway nice blog!! Hope we can keep in touch.. HI.. well i found this blog by chance..sorry for my poor english.
Basically, I am also suffering from this syndrome but in my case as far as i know i did not do any of the major surgeries that i have read here except i remember one for the nose for snoring and respiration problem..besides that i did not do any more surgery..
well, My childhood was similar to yours, loved by frnds and families..overprotection..and also constant bullying by other people..It does break your heart when other people laugh at you..some openly some behind your back and it does need all the courage and strength to keep on moving with life..
From my appearance, i was underestimated,,people had biased opinion about me etc etc..
However what i only did was to prove them wrong!! And I have been doing that till now.. In school, college..I was underestimated by everyone..even teachers refused to have me in their class and already said that i would fail..and the result was that I was always among the most intelligent guy around..and proudly today am a student at the university,22yrs male and still going strong thanks of course to GOD. TOday i have won the respect of everybody..The teachers that once said i would fail now say am very intelligent, my lecturers are proud of me..FRnds love me..by love i do not mean pity..they truly does..and this what i wanted to say..despite all appearance, your personaliTy does play a great part..I can say by the grace of god..i have achieved great things that a normal people cannot do.. Just to mention I had been accepted for medical studies in 4 universties in france, accepted in my country also..though now am doing engineering studies..all this to stress that whatever comes in our way we need to keep on moving..
Today even at the university, some people have bizarre reaction upon seeing me..and honestly i wud say it is normal!! but after knowing me..they are really nice..of course there are exception to that rule..and we should not care about that!!
Today am known for my intelligence, motivated guy, charming, the popular type,always smiling and having good sense of humour!! frnd always like my presence and i am always wanted everywhere I go..
I am pleased to share some bits and pieces of my life..and i only want to say not to desperate in life..we are what we are..appearance like many would say do not count..but it does in the world we are living!! BUT, its true we are not like everybody in appearance and we have to accept this fact!! However we can show the world that we also can compete with the best, we can be better than others and that what I have been doing and by the grace of god..I have suceeded till now.
Finally i wanted some advice if I can say it like that..How people like us deal with love life?? i mean dating and others..?? In this matter, I am very poor and help concerning how to approach someone you love etc would be much appreciated..Once again sorry for my bad english( though i obtained distinction in that subject!! LOL maybe the “chat effect” XD)
Aniway nice blog!! Hope we can keep in touch..

]]> Comment on My surgery by Candar http://candar.wordpress.com/about/#comment-3052 Candar Wed, 14 Oct 2009 14:18:28 +0000 #comment-3052 I should have it in spring/summer 2010 if my ortho is finished by that time and everything goes well, but you can never count on things going smoothly with me :( If not in spring, next possible date would be autumn 2010, so I am really hoping I can make it to the spring date. I should have it in spring/summer 2010 if my ortho is finished by that time and everything goes well, but you can never count on things going smoothly with me :(

If not in spring, next possible date would be autumn 2010, so I am really hoping I can make it to the spring date.

]]> Comment on My surgery by Vic http://candar.wordpress.com/about/#comment-3051 Vic Wed, 14 Oct 2009 13:17:56 +0000 #comment-3051 Hey, you look great from your surgeries, im going to have similar surgeries to u, how long until ur orbital implant surgery? Hey, you look great from your surgeries, im going to have similar surgeries to u, how long until ur orbital implant surgery?

]]> Comment on My SARPE surgery with Le Fort I by Candar http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-3044 Candar Mon, 05 Oct 2009 13:24:28 +0000 http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-3044 Probably next spring if nothing goes wrong (well, lets face it, everything goes wrong with me, so I am trying not to count on this date too much). The surgery should be major in impact, but should be much easier on my body than the previous 2, so I am hoping for only a brief time off work and also that this one could be the last one I have to go through. Probably next spring if nothing goes wrong (well, lets face it, everything goes wrong with me, so I am trying not to count on this date too much). The surgery should be major in impact, but should be much easier on my body than the previous 2, so I am hoping for only a brief time off work and also that this one could be the last one I have to go through.

]]> Comment on My SARPE surgery with Le Fort I by Vic http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-3043 Vic Mon, 05 Oct 2009 06:05:32 +0000 http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-3043 Hey hun, you look great, when are you planing to get the orbital implant surgery? Hey hun, you look great, when are you planing to get the orbital implant surgery?

]]> Comment on My surgery by Teresa http://candar.wordpress.com/about/#comment-3016 Teresa Sun, 06 Sep 2009 11:52:57 +0000 #comment-3016 Hey, you look great. I'm glad your surgeries have gone well. All the best. Hey, you look great. I’m glad your surgeries have gone well. All the best.

]]> Comment on My surgery by jamesa http://candar.wordpress.com/about/#comment-3014 jamesa Sat, 05 Sep 2009 21:57:58 +0000 #comment-3014 this is great that you are sharing your experience. I to am a 60 yr. old survier of crouzons.Like you i have had too many surgerys to remember including 2 le fort surgerys by dr. tasea wgo invented the procidure .I strongly recomend parents have there children have this surgery.Growing up with this is devastating mentally .Iam looking foward to seeing you after your next surgery-your looking great. this is great that you are sharing your experience. I to am a 60 yr. old survier of crouzons.Like you i have had too many surgerys to remember including 2 le fort surgerys by dr. tasea wgo invented the procidure .I strongly recomend parents have there children have this surgery.Growing up with this is devastating mentally .Iam looking foward to seeing you after your next surgery-your looking great.

]]> Comment on Expander removed! ^___^ by Bill Bartmann http://candar.wordpress.com/2008/03/29/expander-removed-___/#comment-3011 Bill Bartmann Fri, 04 Sep 2009 01:06:40 +0000 http://candar.wordpress.com/?p=71#comment-3011 Cool site, love the info. Cool site, love the info.

]]> Comment on Why I decided to blog by Keith http://candar.wordpress.com/2007/08/19/hello-world/#comment-3007 Keith Thu, 27 Aug 2009 05:30:41 +0000 #comment-3007 Thanks for the information! I work in a hospital and just worked with a kid with Crouzon Syndrom. Your information was great! Thanks for the information!
I work in a hospital and just worked with a kid with Crouzon Syndrom.
Your information was great!

]]> Comment on Guess what? by chloé http://candar.wordpress.com/2009/08/11/guess-what/#comment-3002 chloé Fri, 21 Aug 2009 12:57:12 +0000 http://candar.wordpress.com/?p=97#comment-3002 wow !! you're so different now! good look, bravo :) wow !! you’re so different now!
good look, bravo :)

]]> Comment on Hair, story and grans blackeye O___o by chloé http://candar.wordpress.com/2008/03/01/hair-story-and-grans-blackeye-o___o/#comment-3001 chloé Fri, 21 Aug 2009 12:51:55 +0000 http://candar.wordpress.com/?p=67#comment-3001 I love your hair cut! the 2nd is fun I love your hair cut! the 2nd is fun

]]> Comment on Hair, story and grans blackeye O___o by kai http://candar.wordpress.com/2008/03/01/hair-story-and-grans-blackeye-o___o/#comment-2997 kai Mon, 10 Aug 2009 05:35:17 +0000 http://candar.wordpress.com/?p=67#comment-2997 Im so jeaous! My hair never looked that good when i had it like gackts. It works better on you and especially the fluffed up. Im so jeaous! My hair never looked that good when i had it like gackts. It works better on you and especially the fluffed up.

]]> Comment on My surgery by Jimmy Green http://candar.wordpress.com/about/#comment-2994 Jimmy Green Mon, 03 Aug 2009 04:03:21 +0000 #comment-2994 Hey I stumbled across your page whilst watching a program on Discovery channel based on Treacher-Collins syndrome. This is a terrible disorder and the public should be informed of your condition. I know if I had not read this article and seen the informative 45 minute Discovery program I surely would have thought freak. Thank you for your help in making people aware, and teaching us all a valuable lesson, what a person is on the outside dosent mean they have to be scary and mean on the inside too. Theres good in all people and everyone needs to be given a chance. All anyone really wants to do is fit in no matter what the issue may be. I know I myself have felt like a freak or an outcast at times, bald at only 18, small and frail, my knickname was ghoulie (from the 1985 feature film). I wouldnt know how it would feel to have that pain be a part of my daily life. I just take it in stride, just laugh it off, I think you look a little like Rodney Dangerfield, maybe you can use that to be famous? Well Best of luck, thank you for your site and information! Hey I stumbled across your page whilst watching a program on Discovery channel based on Treacher-Collins syndrome. This is a terrible disorder and the public should be informed of your condition. I know if I had not read this article and seen the informative 45 minute Discovery program I surely would have thought freak. Thank you for your help in making people aware, and teaching us all a valuable lesson, what a person is on the outside dosent mean they have to be scary and mean on the inside too. Theres good in all people and everyone needs to be given a chance. All anyone really wants to do is fit in no matter what the issue may be. I know I myself have felt like a freak or an outcast at times, bald at only 18, small and frail, my knickname was ghoulie (from the 1985 feature film). I wouldnt know how it would feel to have that pain be a part of my daily life. I just take it in stride, just laugh it off, I think you look a little like Rodney Dangerfield, maybe you can use that to be famous? Well Best of luck, thank you for your site and information!

]]> Comment on 1st June: Off to the hospital once again by pj http://candar.wordpress.com/2009/05/31/off-to-the-hospital-once-again/#comment-2988 pj Sun, 12 Jul 2009 04:28:33 +0000 http://candar.wordpress.com/?p=82#comment-2988 Lookin good! Nice blog. Lookin good! Nice blog.

]]> Comment on My SARPE surgery with Le Fort I by shote http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2984 shote Fri, 03 Jul 2009 21:09:09 +0000 http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2984 Well , Israelie Cruzoun syndrome patient here, shared much of the experience, thanks for speaking of this. stay charmed! Well , Israelie Cruzoun syndrome patient here, shared much of the experience, thanks for speaking of this.
stay charmed!

]]> Comment on My SARPE surgery with Le Fort I by ky http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2983 ky Fri, 26 Jun 2009 15:26:07 +0000 http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2983 you r so pretty you r so pretty

]]> Comment on My SARPE surgery with Le Fort I by Anonymous http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2977 Anonymous Fri, 19 Jun 2009 20:56:42 +0000 http://candar.wordpress.com/2007/09/16/my-sarpe-surgery-with-le-fort-i/#comment-2977 hi, i am happy to meet you. thank you for sharing your experiences with us. they were really useful for me as a doctor. maziar e. moghaddam hi, i am happy to meet you. thank you for sharing your experiences with us. they were really useful for me as a doctor.
maziar e. moghaddam

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