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
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!!!