IamA 22 year old guy with Treacher Collins Syndrome AMA
I was born with a rare craniofacial deformity. I have no cheekbones, my jaw doesn't move, I have no outer or middle ear, two of my ribs were removed and placed in my skull, I have a tracheotomy(for safety reasons) and I had a gestation tube for the first 21 years of my life. To date I've had 24 operations. Ask Me Anything.
Edit: Thank you for all the positive feedback. It has been a wonderful experience. Faith in humanity bolstered.
If I can offer one bit of advice it's this: Don't let anyone make you forget how great you really are. Life gets better and those haters, well they're gonna hate.
I don't have anything in the way of physical issues, but I have several psychological issues.
My question for you, do you hate being called 'brave' or a 'hero' for living with the cards you were dealt?
Hate? No. Do I think people don't realize how brave they are when they call me brave? Yes. We all have our struggles in life and we all have to figure out how to deal with them. Do I know how to deal with being stared at and called names? Yes. Do I know how to work 3 jobs so support my wife and 3 kids, skipping meals so they don't go hungry? Hell no, that's brave in my book.
That's a great story and a wonderful reason to get into medicine. I wish you the best.
Is there anything you would want parents of kids with facial differences to know? My 8 month old has a long life of looking different ahead of him and I've got no idea what to do. My best plan so far is to treat him no differently than any other kid. Pointers?
That is exactly what my parents did. Weigh your decisions regarding operations carefully. I'm not really pro-cosmetic surgery but pro-functional surgery. Other than that, show him that he's loved, that he's not alone in his struggles and don't put limits on him. Let him try to push his boundaries even though he might fall. And of course remind him that he can do whatever he sets his mind to.
My brother's wife has an uncle with TCS; he was born in the 1950s and had minimal surgery (he has "ears", a tracheotomy, and a small nose). His physical appearance is much more affected by TCS because of the lack of medical science; do you think kids born with TCS today will benefit even more than you did from cosmetic or functional surgery?
Oh I'm sure. Medical science is amazing nowadays.
I hope you don't mind, but I am going to do a painting of you right now....I will report back with the results. This is one of my favorite AMA's of all time BTW.
I have never randomly painted someone, but I found your AMA extremely awesome and inspiring.
I hope you dig it! I didn't have much time to do it, and it was quite an impulse piece. If you want me to take it down, just say the words.
Holy shit dude, that's awesome! Would you, like, send me a copy?
That fedora picture got me thinking. How do you look in an expensive suit, perhaps with a cane and a mean stare? I can't shake the feeling that you'd probably look like a criminal mastermind out of a comic book.
Erm...that was insensitive. Sorry.
OMG that's awesome! Now you have to come up with my supervillain name.
"Treacher Collins" itself actually has a surprisingly supervillain-ish ring to it.
Alternatively, just "The Treacher." He'd be a former schoolteacher turned supervillian.
Oh dude, you win. The Treacher. Hahaha
Please, for the sake of the interwebs, you must do this outfit/costume. Maybe a cigar, or one of those thin ones. Glass of red in one hand as well. gun in side rib gun holster slightly showing.
I'm doing this. I will find a top hat, monocle, cane and cigar. I already own a suit. Just give me some time!
How about recommendations to Copo55 for a new hat
Don't be jealous of my fedora. And before the rest of you jump on him, this is my best friend of 18 years and has fought off more prejudice for me than most anyone I know. Great guy.
Thank you for doing this AMA. Your eyes are absolutely gorgeous.
Are you fully physically functional everywhere else on your body?
If you're wondering if "it" works, the answer is yes. Otherwise yes, everything else works as intended.
What can/how do you eat?
There was a reddit post not too long ago about things your parents said that didn't click until much later in life. They told me as a child that one day I'd make some woman very happy. Why? I have a long tongue and it's very strong. I can eat anything under the sun, granted I may have to break it up to fit between my teeth but once inside, my tongue can tear it up.
Your parents told you that when you were a child? Dude.
Like the bosses they are. I had to be like 7, I had no idea I just agreed with a big smile on my face. How hilarious they must have found it.
my tongue can tear it up.
You ever use that line?
Oh god, I really should.
Absolutely you should. You can try it on me. Here, go:
So they call my tongue The Shredder, wanna know why?
Haha, unfortunately no. Girls in middle/high school weren't too fond of me. Getting older people are becoming very cool though, so we'll see.
Goldenhar's syndrome here (another craniofacial deformity) Had 19 surgeries, 16 years old.' No questions, just sending you best of luck and well wishes :)
Same to you my friend.
Are you able to communicate effectively? Do you speak or use sign language?
I can speak. I'd equate it to having a very thick accent, hard to understand at times but manageable. There are some words I have trouble saying. I used to use sign(my first language) but once I started speaking I stopped.
Started speaking? Could you please clarify?
I started speaking at whatever age babies usually speak at(1-2?) but I learned sign much earlier like 6 months.
That is awesome! I have noticed, in reading, that teaching/creating baby sign language with an infant, is suppose to bolster the ability of learning multiple languages in the subject. Do you speak or write in any others?
You know I never did learn anything else. I did pick up sign in college and found it very easy to understand. Maybe my early exposure gave me a predisposition to understanding sentence structure of sign, since it is so different than english.
With a great attitude like yours, you are bound to do great things. :)
If I ever saw someone with Treacher Collins Syndrom, I would not intentionally stare because I'm judging them or something, it would come from curiosity more than anything. Sorry if people like me have ever made you uncomfortable.
I figure most people are just curious. For the past 21 years I've been the only person with TCS in the state (last year a family with a TCS child moved to my city to see my doctor). If I was "normal" I'd probably unintentionally stare too.
You are the man! What do you spend your days doing? What are your dreams?
Thank you! It depends on the time of year I guess. I work, I go to college, I spend time with friends, I read a lot(Thank you reddit for turning me onto some good books), I lurk reddit. My dreams? To live a good life, be kind to people, get a job I like, love, same kind of dreams I think everyone has.
1969 Z28 Camaro, red w/black racing stripe, brown leather interior.
What are you studying in college, and what are your career aspirations?
Psychology. Hopefully some kind of counseling. If that falls through I can always cook.
Based on your attitude and general outlook on life (yours, in particular), I'd say you would make a great inspirational speaker. I don't know about the pay, but you could surely touch a lot of lives and squash any misconceptions people may have about people with deformities. Because honestly, you're cool as fuck, and I doubt many people would bother taking the time to go out of their way to find that out about you. You're strong and brave, and can use those qualities as tools to help others find the strength in themselves to overcome their own hurdles in life.
Best of luck with everything, my friend, and thank you for doing this AMA!
P.S. I'm about to get my Bachelor's in Psychology as well. Fuck Yeah to us.
Thanks, I really appreciate it.
How do you prefer to be treated by people you meet for the first time?
For instance, do you prefer that they treat you as though nothing is different, and actively ignore your genetic condition? Or does that seem unnatural and forced, and would you prefer that people get it out of the way, or not feel awkward about asking?
It's difficult to know what to do in those situations. I always try to treat people the same regardless of superficial conditions, and suppress my curiosity or concern, but I fear people might find that contrived and as rude as staring, in its own way.
I personally understand curiosity. I may be a little awed at the size of your balls if that's the first thing you ask me, but I won't hold it against you. Most people ignore it and after about a month I tell them it's OK to ask, and they open up. I find that to be a nice way to do it. I wouldn't mind if they asked after a month either.
Thanks for the answer!
Is there anything particularly annoying that you wish people just wouldn't do? Like a reaction that you get again and again that just gets really irritating?
Umm, I dunno. Asking if I was burned or some other assumption is kind of annoying.
Man I hope out of all these comments you see this because I want you to know that, even though I don't know you, I love you with all my heart.
I love you and your username too.
I don't know actually. I find it hard to justify all that money and pain just to make myself look more like everyone else. Functional is a whole different issue but something purely for looks? We're all gonna get old and wrinkly eventually, I just got a head start.
Is it difficult to cope with people who stare? Do you think you will continue to have operations?
Not anymore. I've conditioned myself to not really notice the double takes and subtle stares. But once I make eye contact I usually just smile, maybe wave, and continue on my way. I dunno about the operations, it's still kind of up in the air.
I'm in college pursuing psychology. Hobbies? Movies, video games, reddit, cooking. Wants? To always be happy, simple as that.
Is there a Mrs. Copo55? ;)
There is not. Not even a girlfriend actually.
Have you ever had a girlfriend or have been intimate with someone?
I have not actually. I was very shy up until the last few years. I decided enough of this shit and started working towards being more outgoing. Girlfriends have been tricky as I found myself awkward in my first few attempts.
You watch Eureka, like Jax & Daxter, favorite movie is Usual Suspects, strong tongue, and own an awesome hat? I would totally date you!
Two awesome hats actually =P
Not really a question, but I have to say I think you look like Andy Samberg
I swear it's the nose. And our hair is the same, wavy/curly.
Couple questions inspired by Wikipedia's remark that Treacher Collins is an autosomal dominant genetic disorder...
Do they know whether you got the gene from one of your parents, or was it a new mutation?
How do you feel about having children, given that they would have a 50% chance of inheriting the disease (absent some sort of embryonic selection technology)?
I was wondering when this question would come up. It is a new mutation, no history anywhere of TCS in my family. I don't know about kids. On one hand I know that my life was hell and there were days that I didn't want to do it anymore. And I don't know if I could knowingly put someone else through that. On the other hand, I know that I would be there for my child to lean on through all the struggles of his/her life and would help make them strong.
Ultimately it is a conversation I will have to decide with whoever Mrs. Copo55 is.
Would you consider adopting?
For what reasons do you have to have a tracheotomy? Also i was curious if you could still hear or partially? How does this effect you socially?
My jaw doesn't move, so I have it in the event I choke on something. I have a bone conduction hearing aid that acts as the outer and middle ear. I have no perception of distance with sound so when in a loud area I have a very hard time hearing and have to resort to reading lips. So I spend most of my time listening rather than partaking in conversation.
It is pretty damn awesome and oddly enough fairly durable. I've dropped this thing into sinks, pools, I even buried it once and it still works like a champ going on 21 years now.
Of the 24 operations, how many have been functional? Cosmetic? Have they largely been successful?
They've largely been unsuccessful I'd say. Most of my operations took place ~20 years ago when their knowledge of TCS was limited. The ribs are in my skull in an attempt to get my jaw to work. My jaw used to be about an inch or so recessed and when I was 12 they extended it(most painful one I remember) but it opened my airway and allowed me to project my voice better. I'd say most of my operations have been more for function than cosmetic, neither I nor my parents really cared.
my son, Isaac, is starting the jaw surgeries this year.
Good luck to him, I hope it goes well.
Dude I didn't see this in the comments, so I just have to say that when I read the title I was expecting to be all freaked out by the pictures. In my opinion you actually look pretty awesome/cool, not like ugly/disturbing or anything. Do people ever tell you that? Just my opinion!
Tell me I'm ugly? Yea sure. I've even had someone tell me I'm the antichrist. Do more people tell me I'm awesome/cool? Yep, and their opinions are the ones that matter.
The antichrist? D: Why did they say that?? Was it a complete stranger?
I'm not sure why but yea I have no idea who they were.
Do both your eyes work, but only one tracks? What's the deal there?
My left eye is fully functional. My right eye is practically blind(can't read the big E on vision charts). I can see shapes and colors out of it(well enough to navigate on foot even) and I notice it is more light-sensitive than my left.
You should get a monocle. That would be badass.
You know, I never thought of that. I could go around saying "Quite" with much more gusto/credibility if I had one...
can you grow a full beard?
No! And I am very saddened by this. Part of it is from the surgery and part of it is just genetic.
What's the deal with "two of my ribs were removed and placed in my skull"
They put them in my jaw thinking maybe it would make them move. Didn't work.
So are you going to go on living with ribs in your jaw?
Btw, utmost respect to you.
Well they're there, fused with all that other bone, so no point in taking them out.
Are you able to drive?
Where are you in the second picture? What country do you live in?
Tucson, Arizona. Born and raised.
In the desert is where he spent most of his days.
Chillen out maxing and relaxing all cool, getting some surgery outside of school.
Nah man, I like the rhyme.
Best comeback to someone who has insulted you?
Honestly I've never had to say a word or lift a finger. Any time it's ever happened someone has stepped in to defend me quicker than lightning, even complete strangers. Faith in humanity instantly RESTORED!
I read in an answer that you can read lips! That is an amazing talent to have, I was wondering as to what extent can you understand someone that way. I mean there must be some sentences where words can get mixed up. Keep up the great attitude man, haters gonna hate, and screw them.
Usually I can understand pretty well. When combined with hearing part of the conversation and context I can figure out what they're trying to say. There definitely are times when the mouthing is identical to other words, for example, "I love you" and "olive juice", although they'd have to be pretty strange to say olive juice.
Do you have a shorter life expectancy?
Do you think your condition has given you any unique insight into human nature/society/etc.?
Life expectancy is the same as everyone else.
Being as shy as I was and with most kids leaving me alone I had a lot of time to think. We're all basically the same: insecure, petty, clingy but the other side of that coin is we're all brave, kind, loving. Unique I don't know. True, I think so.
There are other things I'm sure.
Wow I've never heard of this before.Can you talk at all if you jaw doesn't move.. Can you hear?
Yes and yes.
What do you want to be doing in 8 years?
Hmm 30. Teasing my siblings for being old, in a solid relationship, have a good job doing something I enjoy? Really I just hope I'm happy in life.
Have you dated? What do you look for in a partner?
I have not. I have been rather shy the majority of my life and only in the last few years have I really come out of my shell.
It's nothing physical I've noticed. I look for strong, independent women who sees and accept the me that is inside. I am not a perfect individual, I have plenty of flaws. I just want someone to share my life with.
my son is 13 and has this! thank you for being this brave!
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