I was born with Crouzon syndrome and managed to survive 26 years with it. Crouzon syndrome, as well as other congenital defects (now, this sounds somehow nasty) like Apert syndrome or Treacher-Collins syndrome, is a condition that can make your life really difficult. They do not only affect your body and health in a life-threatening way, but also affect your visage heavily. And I am not talking about crooked nose or small chin here. What I mean are things like bulging eyes, non-existent cheekbones, underdeveloped midface or jaw… some syndromes even have things like merged toes/fingers or missing ears. Now, this is not something that you can grow out from.
The problem with this is not as much a problem of visage, but the people around and their reactions. One affected by a syndrome is getting two totally opposite reactions. One is “you are pretty as you are, the beauty lies within” (family, friends) and the other one is “ewww, freak!” (strangers, idiots and bullying kids). As you grow, you are getting questions as “why do you look like this?” or “can you not do something with yourself to look more… normal?” or “did your mommy take drugs when she was pregnant with you?” or whatever else. You try your best to look like you do not mind, but lets be honest… we all do.
Sticking out of the crowd can be really painfull, especially if you can not do anything to fit in. It is not a question of attitude, personality or knowledge. It is the visage, the first thing that people usually perceive from you, that alienates you in their eyes. That also might be one of the reasons why we usually stick close to our loving families and close friends and become quite introverted. (Or, as in case of my brother, we become “clowns” who would do anything to have people like and accept us.)
Many sites about kids/people with a congenital disease say that they are fun loving individuals leading a happy full life unaffected by their disability. Now, I dare to say that this is but a lie. I used to be quite happy as a kid, yes. Untill I got to the point where kids start to bully each other. I became inmediately a target. Of course I kept waking around with a big smile, pretending that “I do not mind the idiots, they are stupid anyway!” and everyone was cheering for me, saying how brave and fun loving person I am and how great I cope with the disability. I never did, but I was really good at pretending. I still am. (Not to mention that I was always a bit of a street dog type of girl who played war with boys and did not fear to get into a fight with anyone who dared to insult her, lol.)
When I grew older, these things became really difficult. Kids around started dating, girls were doing all they could to be the prettiest and coolest and whatever and I was stuck with this face, breathing problems and nasal voice. Cool. Was not fun really. When I look back, I was really foolish – I was trying to look good using all there silly tips from girl’s magazines and on the other hand, I was saying I do not mind how I look and that I do not care. Luckily, this all is over me now.
Thanks to my family, mother and brother with Crouzon’s syndrome (heavier cases than mine) and a stepfather who did not look the best either, I developed hateful approach towards any “vain plastic surgery” or “vain looks” topics. It took me years and radical moving to my grandparents to sort things in my head and realise what a fool I have been. I should not be denying, that does not help at all, but thinking about my options and then taking action to become what I always just dreamed to be – a healthy person. If I think about it, it took about 20 years to finally get to this point.
So, as for now, I decided I do not want to live a limited life anymore. I know who I am, what I want and how I can get it. I do not want to be turned down at job reviews because of the way I look, I do not want to be considered a retard by people who see me for the first time. I do not want to be “different”, which is most of the time just an another word for ugly.
So I set up for this journey. A journey that should help me change my visage as well as treat my health problems caused by a congenital syndrome. I already had my palate widened, teeth lined up and now I am going to have my upper jaw brought forward to the point where it should be. When everything is healed and there is no sign of relapse, I should get some facial implants as well as some plastic surgery after the bone work is done. It will not be easy, but I believe that things will be well in the end and it will be worth the ordeal.
I really hope that this blog could help people who suffer from similar problems that I do and maybe might help them to decide to change their situation as I did, and hopefully not as late as I did.
Here are some pictures to show how Ilooked before my first surgery (SARPE / SARME) – in other words, the starting point in 2007.
This is me almost 2 years after the first surgery:
This is me about 2 months after my second surgery, Le Fort I advancement of upper jaw (with some adjustments onone side).
Only one surgery (cheekbone/orbital rim augmentation) to go and everything is behind me 
And this is how I should look when everything is finished:
Well… now when I look at the pic given to me by my doctor again and more closely… oh… dammit… 
And yes, I love Rayman Rabbids XD
Hey There,
Just read your blog.. I’ve also read your postings on the YTF board.
I really admire your determination. I was not born with a syndrome but do know what its like to not fit in to the classic mold of society being from a very small town.
My childhood was also littered with relentless teasing, poking and being made fun of.
The good thing is that is the past.. I have learned great things from it.. mainly having compassion for others and their plites..so with that said wishing you all the best!!!!
xo
Tom
You’re looking good, and I respect you for chasing after what you want and not letting yourself get discouraged!
Wonderful courage and truthfulness. If only people with problems such as yours could admit that, yes, people that are mean bothers me and I can’t just “ignore it” every time. I was like that as a kid because I was different and was picked on. Things like that still bother me too.
The thing is that, from what I have read, I do not see the pictures above. I see a beautiful women with a strong voice that wants others to understand that not everyone can be “perfect” on the outside, but they can be good people on the inside.
When I come back and read more to see how you are doing, I’m sure that in my head I will still hear that strong voice with an amazing woman behind it.
Take care.
Hi there,
I have enjoyed reading some of your blog and look forward to reading more. Like your brother I became a clown to find acceptance. To this day I find myself springing into the old defense mechanism at the oddest of times. My difference or “ugly” lies inside. I inherited clinical depression and was raised by my mentally ill mother. Its a lovely combination I have to say. I have set out on my journey to deal with my health problems as well – and to change my life. As I call it – fumbling towards myself. I wish you much luck and pain-free surgeries.
cheers to changing for the better!
http://www.fumblingtowardsmyself.com
Hi there,
I admire your courage and honesty and would like to learn more. I am a student-teacher studying for my Master’s and have a little boy with Crouzon’s Syndrome. Prior to meeting this youngster I had never heard of Crouzon’s and am now in the process of educating my peers. Can you please help me? I am giving a presentation and would like to know how teachers can improve the classroom for children with Crouzon’s. What were your experiences? What was good, what should have been different? Any other thoughts or ideas are greatly appreciated.
Sincerely,
Meredith Ring
mr864@nyu.edu
I would very much like to correspond with you. I have a cousin with Crouzan’s and I have so many questions. She has been raised as though she has the mentality of a 5-year-old because of her condition, and it seems this is not so according to your blog. Is it possible that she was born developmentally healthy and has been “retarded” by her environment? My family always assumed that Crouzan’s meant she was an invalid, because she was never properly potty-trained, and a special school. It seems to me that the only things affected by this disease are appearances, as well as internal bone (and possibly organ?) structure. Please help!
Crouzon is usually affecting only appearance and causing some health problems, but in some cases, mental problems may occur, especially with Crouzon, that was left untreated for too long.
I have been reading your blogs, i think you are an amazin person, i really do. It made me really think of how society really respond. i do belive that you are beuteful, and i want to let you know that i will tell Gackt about you, i promise.
Thank you. I would be very happy if my blog opened eyes to some people and helped some others as well.
As for Gackt, do you know that I even wrote to him once? He did not respond, so I doubt he even got a chance to read my letter to him. He is so busy
So interesting to read. I’ve seen you post at YTF and it’s really so interesting to read all that is behind you and your journey.
Thanks for sharing.
Hello well just want to tell you a bout a girl who was in a program called x- factor singing cointest in danish televison.
she got Crouzon-syndromet
She became 2nd not bad really
but hey she is a real good singer.
Look for Laura http://www.dr.dk/DR1/xfactor/Talenterne/20080130095042.htm
I know i must be hard for you sometimes to deal with your problems if i was a beliver i pray for you but im not, so what can i say well i dont have your syndrome but i tell you i got problems too even if you look “normal” dosnt meen things get’s easyer.
)
Anyway i wish you luck
Thank you for creating this blog. I was born with Crouzon too. It was difficult when I was younger; people and teachers assumed I was stupid, so I acted that way. I’ve been beaten up by students for my appearance, and I’ve been made a fool by strangers on the street and on the train. Your blog brought a smile to my face, because I know that someone else is out there who is living life to the fullest. And I thank you. My only worry is that if I start balding, my scars will show the truth of the past that I never want to see again. I hope your screenplay goes well, and keep posting.
“David”
David:
Yes, the scars are a big concern of mine as well, because they prevent me from getting short haircut. They are just too visible.
I wonder why I am so bothered by the bicoronar scar iny my hair and not at all with a huge scar on my arm. Well, I do not know. >___<
Thank you for sharing your story, your an inspirational and spiritual person. I am also affected by Crouzon’s syndrome, suffering from all the physical and emotional impacts that it corresponds with. I am however, a 16 year old Australian girl with a devotion to whatever activity i commit myself to, and don’t let anyone stand in my way in achieving potential. I am having surgery this year but still feel i am beautiful the way i am regardless of the outcome. I may not be the most popular person but, i have friends, family, intelligence and anything i could ever ask for. People are often jealous of me for actually achieving what they can not. I never let anyone get the better of me, better won’t deny that I am self conscious at times but throw me on a stage with a massive audience and I’m self-happy with promoting this condition. The more people that see, the more people will be aware of his condition. I’m brunette/blonde, blue-eyed girl with a heart of gold. And people know it!!
I just read your blog….I was the first person who they performed plastic sergury on. They used the plastic proceedure with me. My family has been really supportive for me through out life and all that I have been through. I understand excally what you went and are going through. For me its a consant battle with the syndrome. I have a constant headace and arthritis in my face horribly. I also am fearful that I will pass this gene on to my children. That scares me to death best of luck to you in all you do.
Can u please let me know if it is easy to get SSI(social securety) if u have crouzon disease, i have had problems all my life, i have a hard time sleepin(breathin problems), headaches, signs of some schizophrenia as a kid, jaw freezes(arthritis pain), etc…….my email is “jdmnad@hotmail.com” thanks………….
Hi!my name is Sara and I have a little girl with aperts that started public school this year.it really upsets me that she’s so easy going she thinks everyone is her friend and I don’t think she would even know if other kids were making fun of her.she is the most beautiful amazing little girl and our family and friends love her very much but kids are mean!me and my husband have always been I guess what you could call very nice looking people so nither of us has ever had to deal with kids teasing or bulling so we have no idea how to deal with it? I was thinking karate classes?any ideas would be great!thanx
I know its got to be hard. I did not realize what people like you went through until I had a life altering event of my own. I was diagnosed with a rare blood disorder which caused me to have to endure a bone marrow transplant. I had just turned 19 and thought I had the world in my hand. I played baseball in high school and had a beautiful girlfriend. However, After 6 months of a trial therapy to bring my blood counts back to normal i decided to go ahead with a bone marrow transplant. 4 days of heavy chemo (enough to destroy everything in my body and completely destroy my non functioning bone marrow) and another 6 months of recovery, I am just starting to get my appearance back and realized just how vain I really was. Now i don’t take everyday for granted and try to treat everyone just like they deserve to be treated…. Like a human being. It was hard looking at myself everyday in the mirror at 120 lbs and nothing but teeth and eyeballs. My cheeks so puffy from the prednisone they gave me that I looked like I had three marshmallows in each cheek. I just want to commend you on your journey and its amazing how strong you are. But Hey! as you know it is the tough who endure and survive and that is why we are both here today. KEEP ON KEEPIN ON!
11 surgeries later and 19 years of hell it seemed. Or maybe it was just a test from god. I woke up from a dream that i call my life.
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I read your blog and you are an amazing and inspiring person, don’t let people bring you down, i cant say i’ve had the same problems as you but i myself was born “different” physically different, and i know how it isnt fun with people staring at you and calling you names, i had good friends through school and social things, i am glad to say, but even so, its just horrible, no one can ever truly know how one feels. Most people are ignorant idiots. They dont know the difference between genuinely amazing and special, from Fake ignorant dirt. As i grew up , i began to realize i was different and began to lose hope in people, they were all in the end just ignorant and as much as they tried to help, they only failed. But i learned to have patience in them, not all people know and think the same way we do, or can. It’s just best to go our own way, even if it hurts, by dwelling on those things we only hurt ourselves. And please dont worry about your looks, even sometimes i can’t help but fall into that mentality that i worry about it, buti n the end i realize its all pointless, the true beauty lies in the Soul. Our bodies are just mere shells to hold our own Soul. How we look doenst matter any. But you are trly an amazing and inspiring person. and dont worry about what people are saying just to flatter you or make you feel better, we truly mean it. As for your life, live it how you want, do what you want ot do, dont let anything hold you back, i didnt, i was born with one good left arm with only three fingers and my right arm a bit clubbed no elbow nad three fingers, but that didnt stop me i learned and can play piano, trumpet and learnng the Cello, along with drawring and other various talents, people waste their potential, so often, us who are “different” get the talents, don’t worry, be happy and just Live. – A. Friend
I too suffer from a congenital defect (albeit not as severe as yours) and you definitely hit the nail on the head with what you write about pretending not to care and that kids who stick out and look happy really don’t inside.
Anyways, just wanted to say you seem to have a great personality, you can obviously write and you face your difficulties head on with a seemingly carefree and optimistic smile on your face and that tells more about a person than any visage perception. You’re my hero of the day, even though I just sort of stumbled upon this blog.
With best wishes of happiness in your future,
T.B.
Hi Candar
I’ve tried to send you a copy of the book chapter but the email keeps getting rejected. I will send it to you with my hotmail address. I am thrilled that you are interested in being involved in the book. I hope we can “connect” soon.
Mike
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!
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.
Hey, you look great. I’m glad your surgeries have gone well. All the best.
Hey, you look great from your surgeries, im going to have similar surgeries to u, how long until ur orbital implant surgery?
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.
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 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!!!
Wow. I randomly stumbled on to your blog, and found it very interesting. I just wanted to leave a comment to say that you look absolutely BEAUTIFUL!! It takes a lot of guts to take this sort of action in your life. Bravo to you! You are a very strong individual, and deserve a lot of respect.
Hello there. First of all I’d like to tell you how I got here. I typed broken butterfly on google to find some images and I kinda ended up here. I’m glad I did though.
Also please forgive me for my bad english.
So… I have to admit I had no idea a syndrome like this existed. I’m not very well informed in general. Reading your post I felt like I could really understand what you are talking about. And the fact that you were so truthful and honest helped a lot. Because I don’t have a syndrome like that and I haven’t encountered anyone that has it and I never imagined what kind of things go on in people’s minds.
I hope more people read this and get from your words the things I got.
Thank you for sharing.
somehow I managed to stumble upon your blog/site when I typed “Gackt haircut” into google image search (which btw, you have the perfect hair for a gackt haircut and your’s looks spot on!)
anyways, I am glad I got curious and clicked on your images and came to you blog. Your story is amazing and a testament to the human spirit. And quite honestly, I think you have some of the most interesting and beautiful eyes I have ever seen. The uniqueness of them is quite captivating.
I know how it feels to be picked on and I am glad to see you have a strong spirit and can push through all of the bad stuff.
Best of luck to you!
PS: I liked your blog entry about miyavi as well. “Selfish Love” is one of my favorite songs by him as well as: “Coo Quack Cluck” <—that song is about how he was picked on as a young boy for a handful of different reasons and how he was the "ugly duckling". It is definitely worth checking out!
Hi Candar
I have just read your story. It is very inspiring to me, as i have a 5 year old daughter who has crouzon syndrome also. She doesn’t have it as bad as you do (they say her case is a mild to medium case, but she had to have the craniosynostis operation in 2005 at the Mater Children’s Hospital in Australia (she was 14 mths old) where they cut her head open from ear to ear (& you can see the scar when her hair is pulled up, which i don’t mind, because when people ask why she has it, i proudly tell them about her operation, etc).
She is apparently developing normally & mentally for her age, although does have some issues with her hearing & speech (she currently has appt’s with the Dental, Ear/Nose/Throat, Speech, Eye & Plastic Surgeon Clinics), which cause me to have take a fair bit of time off work (thankfully i have a boss who understands), but i wouldn’t have it any other way.
Looking forward to your new pics & news after your next op. You are looking great!!!
Thanks for sharing your story
Hello,
I came across your blog – very motivational I must say.
I was wondering if you could please tell me if you received treatments in the US – and the name of your surgeon(s).
I thank you for any information that your willing to share.
If possible, please contact me via email. Thank you!
Best,
Christina Restivo
Rhode Island, USA
Email: christina_restivo@yahoo.com
Candar,
Thanks for writing about your experiences with Crouzon’s. My neice, Alexis, also has Crouzon’s. She is 5. She will be having the Le Fort surgery in July. She is really smart and funny, but she does not like to talk in public. She gets embarrassed when her trach. makes noises. I feel bad because a 5 year old should not feel self conscious.
Anyway, I am going to share your site w/ my sister.
I think that you are beautiful, and I love the red hair.
I have just come across your blog when, aged 36, I decided to do some research into this syndrome, which I also suffered from as a child. I had corrective facial surgery when I was 16, but have only recently started looking into Crouzon’s again when I was diagnosed with otosclerosis (hearing loss) and my mother told me it is probably linked to my Crouzon’s. I have been reduced to tears reading your blog, just to see that there is someone out there who went through what I went through. Your photographs are unbelievably similiar to photos of me before I had my surgery – the similarity really is uncanny. And the feelings and emotions you describe and just exactly what I felt when I was younger – and sometimes, still now. Thank you for writing this – it’s good to know there are people out there who have felt the same, have dealt with the same things, and have come out fighting too!!
Have you hadf your orbita rim implants?
Are you going to post an updated picture?
I love your progress.
Hi! I have been doing some research on crouzon syndrome and the like, and I have to tell you that your blog is so important. I find your frankness on beauty to be amazingly refreshing, especially because I feel I have always struggled with my own image. Your journey and immense adventure for satisfaction is not unlike what anyone else has to go through to accept their looks, but I feel closer to your quest because I’m so honored to be able to read those intimate experiences off of your blog. I think your transition has been amazing – your surgeries look natural, and I feel like red is SUCH a beautiful color on you. I would do anything for your eye color!!! Please keep on posting your intelligent and witty blogs
You are to be saluted young lady. Your appearance has been improved as a result of your surgeries but your greatest asset remains unchanged: Your fantastic blue (and soulful) eyes! You are very pretty. Prayers for you and your life walk!
CB
You are incredible. It is so good to hear another person with Crouzon’s talk about how it has affected their life. Along with this disorder comes physical, social, mental, and emotional pains. I understand where you are coming from; it is all too real to me. But that is not where it has to end! I lead a life filled with joy, but I had to gain the right perspective on my tribulations. In the end, I know my experiences have made me stronger to help others. Smile, you are beautiful, and you are an amazing person.
My grandmother, father, brother, and I all have crouzon’s. In a few weeks, I will undergo my sixth surgery, although this one will be rather minor. I had surgery at 11 months old, 5 years old, two at 11 years old, and one last march. Last march, I had a similar surgery as your last one; they moved my maxilla forward 11 millimeters, reshaped bone, and gave me cheek implants. My surgery in a few weeks will correct some features of my nose.
I ran into the same troubles when I had my surgeries at 10 years old. I was well liked before my surgeries, then after my first surgery, no body would talk to me or even look at me if they could help it. I switched schools to a situation that was not much better. People literally laughed in my face and yelled insults across the room. However, I always found reasons to smile. People would ask, “how can you always be smiling when you are made fun of everywhere you go?” I guess I knew there had to be more to life than looks–if not, I was in big trouble
Crouzon’s has been formative in my life. It has filled me with a sense of compassion. Understanding others requires more than summing them up with a glance. I learned this because I had to put myself out there, meet people, and let them get to know me. The fact that I can go up to someone and make a friend is a blessing and a miracle, considering I used to run, hide, or take any measure necessary to avoid people altogether. I stood in front of 50 people last summer (I only knew half very well) and gave my testimony. Again, considering I used to stand in front of groups and either start crying or just draw blanks on anything to say, this was a huge step in breaking chains that have held me down.
“Furthermore, we rejoice in our tribulation. For tribulation produces perserverance; perserverance produces character; character produces hope, and hope does not disappoint, because the love of god has been poured into our hearts…”
~Romans 5:3-5
The world needs people like you. You understand pain, grief, and change more than most. Keep reaching out, tell people who you are. Its difficult, but I think in the end you will find that you and your life are more wonderful than you ever could have imagined.
Your life and my life are relatively the same. The only difference is that you’re older. I’m 15, I’ve had 26 surgeries because of crouzon syndrome. It’s hard living with the bullies at school, it’s sad at some of the things they say to me, but my face looks a lot better after each surgery. As you said, it’s hard fitting in. I’ve only had 1 gf, most guys my age have had about 10, but I don’t let that bother me, I like myself for who I am. You’re very pretty, you should see my before and after pictures of my nose. Also, when I have to get surgery, it’s always difficult, a 4hr surgery ends up taking 12, ect. I hate how people look and talk at you, but since my rhinoplast, people don’t really stare anymore. Well, if you would like to talk email me marco10304@yahoo.com
Hello! I found your blog because my newborn nephew was just diagnosed with Courzons. Your successful life is quite an inspiration as we try and navigate our way through a lot of new information. And I must say, if you could somehow sell your eye color, you would be rich! Such a gorgeous color. Anyway, thank you and keep up the good work!
Thank you for opening up and sharing your one of a kind wisdom with the world. I am considering adopting a child with Crouzon Syndrome and came across your blog while researching it on the internet. I would appreciate any and all advice you could give me.
Molly,
I have a now 12 year old daughter with crouzons. I will tell you it will be time consuming to the point of not being able to hold a full time job when it is time for a major surgery. My husband and I decided we could make it on his income alone. I also would like to share that my daughter’s first mid face advancement surgeries back in 2002 cost over a quarter million dollars here in the USA. There will be another in the next year or two equal to this not to mention all the little ones to come and that have done for small fixes. A little FYI, this child you think of adopting has a 50/50 shot of having a child with the same birth defect. If you have the insurance coverage and means to (not to mention the love and dedication to keep this child physically and mentally health) go for it. This info may be late since the date of you posting. I have know idea how long an adoption takes.
I love my daughter and to say I would not change her for the world woul be a lie. She is who she is and for that I love her.
Jen
Hi! I’ve been reading your blog a few years ago. But my English isn’t so good, therefore I don’t understand everything seldom.:) I was born with Crouzon, and I had 2 surgeries in my childhood, but I am not satisfied. My mother and we are going to Paris in June to visit a professor. I hope he could help me.
I would like to know who was your doctor and where was your surgery?
I’m looking forward to your answer. My e-mail is: zsuwithin@gmail.com.
Thank you for your answer in advance!
Best wishes,
Sue
Hey There,
I just read your blog and i was amazed at how familiar it sounded. I was born with Crouzon Syndrome and have had the same problems you did growing up.I have grown up with the fear of being scared all the time of having operations, I am 19 years old and sometime at the end of the year I will be having the operations you were describing, I will be having reconstructive surgery on my skull and face. Since the operation date is getting close, i realize I have to make a change in my self, think more positively. Your story has motivated me to do this. Thankyou! If you would like to chat, I will be happy to talk to you
Take care
Hello,
My mom told me about this blog, so i thought i would check it out. when i read it, i realised how your life is so much like mine, except for the fact that i got the srugery earlier and i am going into grade 9. I remember in my younger years, like 7-9, any new kids who just met me, would always ask, ‘why are your eyes like that?’, of course since this always occured i asked my mom what i should reply, and she told me to tell them that i was born this way. so i did. and i feel your pain, because i got teased constantly, being called ugly or stupid. of course you seemed to over come this, even though i had the surgery in grade five, and it was a surgery that fixed my face in 3 months, i still have the after affects, such as breathing, balance, fused thumb etc. but i think you were kinda of lucky, i mean wiith the fact that your mother and brother also had it. i say this because your mother would have gone through the same thing when she was younger, and your brother too (if he is older), so you had support and some confidence with what would happen and you would know what to do. i am the only one in my family history to have cruzon syndrome, and my brothers are also constantly teasing me about it, as if school wasn’t bad enough. reading this blog has given me some hope about what obstacles may come in my future. i hope your journey goes well and that you stay this determined for a good while, like my step sister always says, ‘Determination Gets Me There’
Brianne
merhaba
ben Türkiyeden Sezer
bende bir crouzon sendromluyum
sizi görmek bana umut oldu
yaşadıklarınızın aynısını bende yaşadım
insanlar çok acımasız…
ama sizi böyle görmek beni de harekete geçirdi
bende bu sene gerekli ameliyatları olmaya karar verdim
yıllardır düşünürdüm ameliyat olmayı
ama ya param olmadı ya da korktum
şimdi sizi böyle güzel görmek çok hoş
umarım bende buna benzer bir görüntüye kavuşurum
Not: yazıları google aracılıyla okudum sizde öyle yapın
I think that even before your surgery, that you are pleasant looking and not ugly. Looks are a matter of opinion and I think that even before your surgery you look fine. You have a very nice profile. But just remember that it is that beautiful person that you already are inside that matters the most.
Have a great day!
I have a similar syndrome: Trichorhinophalangeal syndrome which leaves a person with many of the same facial features as you except with a huge nose and no hair to boot! My eyes look almost exactly like yours. However… We have a secret weapon… We have all the time in the world to ourselves to improve ourselves. We can become immensely smarter and better than everyone else because while they are out partying, we are studying. Have you ever heard of the movie Revenge of the Nerds? Well, I’ve lived it. Wait until you hear my story…
Like you everyone told me I was stupid because of the way I looked. If there is something wrong with your face people assume you are retarded.
After college I couldn’t find a job because of the way I looked. I spent my time in isolation studying computer programming. In fact I loved it and it provided an escape for me. I became so good at it that I got a job doing it. 3 years later I was making $50 an hour doing it. Who’s laughing now jock boy or homecoming queen? I rocketed to the top of my profession. In 1996 I went to work at Apple writing software. Then I went on to one great comoany after another. The next year I worked for Hitachi. I became so masterful at what I did that every company on earth wanted me. Soon I was making $120k a year, every year. I reached my peak in 2001 when I went to work at Sony working on Playstation. During the 90s I was unstoppable and tore up Silicon Valley. I am now writing several books about the experience.
Do not ever let anyone stop you. Ever. We have many advantaes the pretty people will never have. They’re too busy being popular or going to parties to ever be successful. The mark of the champion is within, not without. Go after what you want and when you get there laugh all the way to the bank.
I can’t tell you the incredible satisfaction I have enjoyed laughing at those who used to laugh at me. As they turn green with envy and stamp their feet and pound their fists and remain poor, I laugh at them every day. Living well is the best revenge. I get to live a life of supreme triumph every day of my life – because of my handicap! All they get is to start to see themselves getting old and remaining poor. My life is so awesome I can’t even believe it. You cannot believe the sheer euphoria I enjoy every single day as I laugh at the poor, stupid, pretty people. It seems in the end poetic justice wins.
One more little thing: I discovered early on that I could improve the appearance of my face by exercise. I worked out and got in shape and then I started doing hard pushups every day. Not only is the extra muscle tone attractive, but it seems that hard exercise somehow increases blood vessels in the face and neck too – rounding out your face and making the bad bone structure less noticable. If the head is burried beneath inches of facial muscle it looks more normal. In the 90s when I was in my 30s I would run and work out to keep in shape and then do the pushups. My advice is to become a health nut. Take up jogging or cycling and do it every day. Lift weights if you can or do pushups – even if you are female. I was in such incredibly good shape at one point that I even had girls tell me I was cute. My grandmother told me “Your features are becoming more handsome”. It seems hard regular exercise helps the face too – as the facial muscles grow and become bigger it pushes up the cheeks and helps cover the eyes and make them appear smaller.
Anyway, you’re on the right track and I am happy for you. Just remeber: don’t let anything or anyone stop you. Sail on, voyager.
PS: I LOVE the way the Le Fort surgery brought your nose forward too. That really looks fantastic. Victory!
Hi,
I am a teacher of deaf and hard of hearing students. I have a student who has Crouzon’s – much more severe than yours seems to be. She has not had any surgeries that I know of except to get a bone anchored hearing aid. She’s a sweet girl, but hates being teased at school, and only has a few friends. Her family is very poor, so we are trying to get her in touch with surgeons that can do the surgeries at low or no cost to the family. Her eyes are so far out that they look like they could come out at any time. It actually makes me nervous that it will happen in class! Best of luck to you…you were nice looking before, but now you look great! It’s amazing how that one surgery (upper jaw) changed you’re whole appearence.
Michelle
Wow, I think you are very very pretty. I wish I had big eyes like you. You know, they are the windows to your soul—so you must have a very big and bright soul. Also, love the hair color!—from one redhead to another
I never know of this syndrome until I starting seeing a man who’s whole family is affected by this, He was spared the syndrome and so where his two boy, i see how sheltered the children of this sisters are and hope that one day they two can see that there is something that can be done to help them lead a happier and healthier life… Life is hard enough without the constant reminders that yes we don’t look like others yet on the inside our hearts beat the same.
i also was born with cruzons, went thru all the crap of being called bug eyes, pop eyes, frog eyes, i dropped out of school because i couldnt take it anymore, i had a laforte 3 about 15 yrs ago, i was very disappointed with the out come. your surgery looks great, i qnly wish my outcome had been as good. so here iam, i still hear people laughing and making remarks. if they only knew! i would just much rather be dead than hurt ,and made fun of anymore people ( not all} are so cruel do people realy think that we chose to look this way!!! of all the miracles in the world, why do i have to look this way. the hurt from people is so deep, so so deep. for myself to be dead would be the best thing that ever happened to me
hi …. I am from jakarta Indonesia, Greetings all! my son 12 years old man suffering from crouzon syndrome …… Could you share it, thanks
I stumbled upon your blog today. My sister was born with Crouzons 59 years ago. My mother was made to feel she had done something during the pregnancy that caused
the deformities. This was at a major big city hospital and no one there had a clue what the real problem was. Fast forward 37 years and my sister has her first child ( after years of infertility) and she had Crouzons also. The doctors were on top of things and she had her first surgery at 6 months. She is now 21 and a beautiful college coed. You look great and I am so proud of the process you have been through to get to this point. Thank you for sharing your story.
Hi, could you please tell me if there is surgery available for babys for infused elbows?