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I'm the guy with Cherubism - AMA
Hello world.
I've been answering some questions regarding Cherubism in other threads, since my old post closed.
I'm here to answer any of your questions! Since I live in Denmark, I'm going to answer these from tomorrow evening (Central European Time) from around 8pm - August 7th.
Edit! I will answer your questions from time to time. And I will continue to answer them, as long as new questions are dropping in! So no deadline or anything.
So this is my story...
So first of all. I’m a 28 year old male from Denmark. So English is not my native language. So please don’t flame me too much about my choice of words. So some time ago, I stumbled upon the search field. I thought I would try give it a go on ‘Cherubism’, and to my amazement, I saw there was actually several posts! Most of them just making fun of the girl who was brave enough to open up her heart to show the world, her story! So now I think I’ll tell you my story! How it is to be living with the rare condition called Cherubism.
So Cherubism is basicly a rare genetic disorder that causes prominence in the lower portion in the face. I do agree with people who thinks this disorder looks a bit like Stan from American dad or the guy from Forever alone. We do tend to have bigger lower jaws or a bigger mouth in general.
My family Anyway, I was born, just like my mother and older brother, with this condition or disorder if you want to say so. My family noticed something was wrong when my older brother (who is 5 years older than me), when he dropped his first pair of teeth and was getting the one he should live with, for the rest of his life. They noticed something odd.. they were twisted, so the backside of them was pointing out to the front. Basically turning them 180 degrees. My brother was back then, what I remember, a rather big boy of his size and age. So I guess it wasn’t as obvious when you think of those images of the girl with the huge lower part of her face. My brother wasn’t really affected as much as he could have been. Some of his teeth was twisted and a few was missing. A x-ray showed some, if not all of the missing teeth in his jaw. Every one of our teeth is being made within small pockets in the jaw. But these pockets in our case, the ones with Cherubism, are somehow, messing up the state of making these teeth the proper way! So they found out that my brother had this condition, and traced it back to my mother (which was still alive at that time), and her mother as well. It isn’t really shown on my grand mother, and by that, even my mother wasn’t really aware of this condition. They say that boys in the family would be hit in a much larger scale, where it would be a lot more visible.
Me In my case, my teeth was coming out in various directions after the first pair was gone. And in general being in really bad shape. Before that I had pretty okay teeth, compared to what I got later on. I got a picture here to show how I looked. I’m not sure how old I am in this picture. But my guess would be 4-5 years old. Since I had not started in school yet. As you can see, it’s visible to anyone that my lower jaw and chin is bigger than what a normal kid in this age would have. Yet, not as big as other cases I’ve seen. Going through puberty wasn’t really that big of a deal for me. Since it was a rather small community, there wasn’t much bad words etc to either my brother or me. I think we were both liked by a lot of people. And I haven’t really had any trouble finding good reliable friends during these years. So overall a pretty nice childhood! I went through 2 surgeries while being a teenager, where I had some teeth transplanted from my jaw and put into “near right place”, so they could grow out and work as normal teeth. Most of these teeth, or basicly the majority of all my teeth was in really bad shape. So from time to time, while getting older, and my jaw and bones growing. It made some of the teeth get a bumpy ride. It resulted in getting a few of them removed, if not falling out like normal teeth do in the first place. Though it was quite upsetting, to know that you’d lose a tooth or two, which wasn’t supposed to leave your mouth at this time. I’ve always been telling my doctors that I wanted to get all my teeth removed, so I could have something, which would actually work for me. Not only from a cosmetic view, but also for the actual usage. Today I can’t really remember when I last took a bite of an apple. Don’t get me wrong. I love apples and stuff, but I couldn’t really take any bite of any such thing, since my teeth was loose as hell. But my doctor said I would regret, getting all my teeth removed, and that they wouldn’t do it anyway! I was told that I had to wait until my bones was fully grown, before they could remove any excessive bone and start working on my teeth. Around 3 years ago, they finally said it was time to do something about it. They would try do it as fast as possible for me, since I had already lived with it for 24 something years. So they started out by moving the left overs with braces. I had braces on for almost 3 years. They moved all of them and found out the two front teeth had their roots in an odd position, so they had to move the front teeth back and forth, which ended up taking around 6 months. They started of by saying the whole thing, might end up taking a year. I was very sure that this was impossible, hence the previous time frames they had shown and I had experienced.
3rd surgery About 3 years ago, they did the 3rd surgery on me. This time they: * Removed bone from around my nose area * Removed excessive bone from underneath my eye (They said it had the size of a pinky) which was pushing on the eyeball, which they thought might be the reason my vision was bad. * Removed some bone from my upper chin bone. * Took bone from the hip and put it up into my lower jaw, to give the upcoming teeth a better base. Before the surgery I looked like this: Front view - Side view As you can see, I clearly had something under the eye. Pushing it up. I then, as a kind of ‘My way’ to get over this, and thinking positive about this. I did take a picture every day for 42 days after the surgery. I’m not sure if my personal webpage can handle if more than a few people visit my website, but here it goes: (Not safe for work, unless you’re a doctor) Link to pictures. Dag is day in danish, so Dag 42, is obviously day 42 after the surgery. The bone taken from the hip was the worst. They pull off your muscle in the side, to get access to the hip bone. Which when they put it back on, you need to train up. It’s like you’ve been exercising for months without ever taking a break. The eye part was bad as well, where I thought my eye would burst from all the blood inside it. But that only lasted for a day.
4th surgery So my 4th surgery was February this year. I was told this might be the final step, where they would make ready for the teeth missing and getting the whole thing sorted. While under surgery they found out that the teeth they had just used 2 years by moving, couldn’t really handle all the moving. The roots was damaged, so they had to remove those which couldn’t be used for anything. So they did this: * Removed all teeth but 8! (Got 8 left in total - 5 in upper jaw and 3 in the lower one). * Broke my jaw in 4 places (2 in each side), to adjust the jaw, so I could have a real bite. * Made the jaw ready for implants to build up new prosthetic teeth up from. After the 3rd surgery, they got me on pain killers for like 4 weeks, and I could feel it right away, when trying to get out of it. This time I of cause wouldn’t like to be in pain, yet I didn’t want to toxic my body with these pain killers if I didn’t really need them. It turned out that I used pain killers for 7 days, and then stopped them from one day to another. 8th day after the surgery, I started working again full time. Though I had to eat yoghurt for Just over a month. The yoghurt was by far the worst part of all this! Here’s a picture of how I looked only a few days after the 4th surgery. I do look like Stan from American Dad! Link to image
Today Today I'm doing great! I got my implants and I can chew the hell out of carrots, apples or what ever I want to! I'm happy and I enjoy everyday to it's fullest!
Here's a picture of me at 911 memorial (ground zero) a month ago And A picture of me waving
And me at my very first baseball game! Twins lost by the way.. Picture
My Proof: http://i.imgur.com/utWqkwC.jpg
zakbro32 karma
He's probably confident enough that he'd go out tonight, but he hasn't got a stitch to wear.
willardfillmore14 karma
Morrissey + Conan o'Brian is what I'm seeing.
Turns out to be a pretty good combination.
MeAndCherubism7 karma
I guess it's the hair.. it's a new thing for me.. Didn't have this hair cut before. But it feels okay. Though I got a lot of attention when I went to US this summer ;)
MeAndCherubism3 karma
I think I'll just have to cut some length of the top. Just a inch or two! It's really long: http://i.imgur.com/lUq6FsL.jpg
LinkKorko16 karma
Do you like the way you look now? Do you really see any flaws? To me you honestly look fine and even Jonnynonmae12 seems to think you look cute.
MeAndCherubism9 karma
I do like the way I look now. I don't look at myself to see flaws really. I'm pretty happy with my result, and to be honest I don't want to change completely. There would probably be a ton of things, people could tell me to change. But I'm good for now! I haven't got the awful surgery look yet. So let's keep it there :P
joyish11 karma
I think you're really hot, I wouldn't change anything :) what a fantastic surgery result... Although you definitely weren't unattractive beforehand :)
MeAndCherubism3 karma
Thank you. Well, to be honest they haven't changed my look that much. It's not like I get stunned from the changes, when I look into the mirror. But I wouldn't want anything else to change. They asked me if I wanted to have my eyelids changed, since I look quite Asian. I refused to have that done, and I'm glad I didn't do it.. because, that's just the way I was born, and this has nothing to do with Cherubism.
BiosBitch1 karma
I'm glad they didn't change your eyes I think they are awesome and give you a unique look in a very good way.
SpagattahNadle6 karma
I gotta say, looking at your photos of you change- you are really attractive. Especially your eyes :) Love from Australia <3 xx
MeAndCherubism5 karma
No I hate that stuff :) Though I got a lot of "Koldskål" infused with protein and other goodies! I had almost 3 weeks of very soft food or fluids. I do like food with texture, so that was one of the things I didn't enjoy at all ;)
MarzipanFairy4 karma
Ahhhhh I miss koldskål. I make it sometimes here in the US but also have to bake the kammerjunkere, which is a pain.
MeAndCherubism7 karma
I love koldskål! If you PM me your address, I'll send you a box with my favorite kammerjunkere! :)
Reverse_Skydiver3 karma
You Saint. Fuldkornkammerjunkere med koldskål is the best stuff in the world!
MeAndCherubism3 karma
Haha I haven't really tried them. But I would have to try them for sure!
howlermouse5 karma
Since you grew up having surgery, how has it impacted your self esteem now? Are you more self conscious about how you look or less?
MeAndCherubism4 karma
Good question.. I've always been aware of my looks. It has of cause a impact on my self esteem. I did go out previously. But I didn't really want to meet new people, like I want to now. But yeah, I do go out now, and I do enjoy meeting new people. I'm a lot more confident today, than I was 5 years ago.
effa943 karma
Have you ever done a Stan cosplay? Also, how hard was it to eat before your first surgery? Also, greetings from Sweden!
MeAndCherubism3 karma
No, I've not done a Stan cosplay. Though I've done a lot of other cosplays like Brüno (sacha baron cohen). Greetings swede! ;)
MarzipanFairy3 karma
Hejsa! Were all of your medical expenses covered by the Danish healthcare system, free?
MeAndCherubism7 karma
Hejsa! Yes. Danish healthcare system pays for everything. So I "owe" the government a lot on that account. I know that my implants alone costed around 175.000kr which is around $32.000. Then all the surgeries, with professors and what not... I asked the doctor who's responsible for my treatment, what he would estimate the costs to be. And he said that the value is difficult to set, but above a million danish kroner.
cutterbump9 karma
You look ABSOLUTELY amazing & quite sexy. I just went through complete upper & lower implants here in the US & it was close to 50K. I am now in the "permanents" process where I'm having fittings with wax models every week or so—to make sure that the final teeth are perfectly placed, etc. This entire thing started Feb 10th & I am SO OVER IT. What a crap year so far. LOL
MeAndCherubism2 karma
Thank you! Ahh so you know the drill!
How is it working out for you? Did you have all your teeth removed, or just some of them?
I'm still missing my final ones. I got the temporary ones, where they did mold them etc. But now I've had these since February or March, and I think they got the final ones ready for me really soon! I'm going to meet up with them later this month, and hopefully they have it ready. Right now, these are working quite well for me. So I don't really pay attention to time, as I did a year ago! But yeah.. it sucks with all these fittings! You're soon done! :)
Best of luck!
cutterbump5 karma
The cement that was used with my braces in high school "ate through" the enamel of my teeth so I've been fighting to keep them all my adult life. I have wasted thousands of dollars in this useless quest (root canals, caps, crowns, veneers, more root canals, gah) so I finally decided to have all of them pulled & implants put in. My god & I volunteered for this shit. haha
I have nothing but respect for the amount of pain you have gone through because I know that my own pain was MINUTE compared to what you've been through in your life.
edit to answer question: It's wonderful to be able to bite into an apple & eat Captain Crunch again. I missed Captain Crunch! The temporaries aren't placed exactly where they should be so I look odd & I'm a little tired of that, but so far so good.
MeAndCherubism3 karma
Oh my goodness! That's one hell of a story you got to tell!
Wouldn't you be able to get some kind of refund, since it was the cement which did it?
I guess you didn't have all of your teeth pulled out, or what? I still have like 8 of my own left. And I'm quite happy for that. I can actually feel when I chew food, compared to if I didn't have these teeth in the back of my mouth (no idea what they're called in English).
cutterbump3 karma
Oh yes - I had all of them pulled out. GOOD TIMES! hahahaaa
(teeth in back of mouth: molars)
MeAndCherubism1 karma
Oh mine! That's a tough one! I could imagine it's very difficult to figure out how much pressure you need to deliver to bite in things, since the sensation is gone!
Molars it is!
ScaredTodayThrowAway2 karma
Hello! I had an oddly similar thing happen. It was combined with a strange situation where my parents lost their insurance and my dentist refused to remove my braces without a large sum of money (which my jobless parents of course didn't have). I ended up having to keep the braces that were eating my teeth on for about 5 years longer than needed without a single adjustment or checkup. When they removed the brackets most of my teeth broke off huge chunks. The insurance I used at the time only covered extensive fillings and shitty crowns, all of which have failed dozens of times and are continuously painful. I can't eat normally, lots of pain, you know the routine.
Would you mind telling me more about what it's like to get implants? How much pain is there compared to other procedures? How permanent are they? Anything else at all would help. :)
MeAndCherubism1 karma
Wow.. five years! Yet another reason why I'm happy I grew up in my part of the world! I feel so sorry that you had to go through all this.
Depending on how many teeth you would get removed, I think they can remove almost all of them in local anesthetics. In my case, they removed my teeth the same time they inserted the implants. So of cause I was knocked out completely, since they knew they had to adjust my jaw and stuff in the same process. I guess you can choose to get knocked out. I would prefer that if I was you, since the noize and movement from the working will be very unpleasant.. You can hear everything, and if you've had a tooth pulled out yet, the noize is really loud in your head! In my case they took out all the teeth needed, and drilled the metal pins into my jaw. Sewed the gums to cover the pins while they heal. 3 - 4 months later they cut open the gums to expose the pins. This part hurt, since they will have to inject anesthetics into your gums, and since there is only a thin layer of skin and then your jaw bone. They did around 10-15 injections to me, and everyone of them hurt. It's 10-15 minutes of pure hell. But afterwards you can't feel a thing. After your implants has been exposed, they need to heal up before they can attach stuff to it. This will take a short period of time! They are permanent at a certain point. I think you might need to have it changed every 10th year or so? I can't remember this part sorry. But you need to floss the pins every day for the rest of your life.
It's worth it! If you have pain eating stuff now, don't hesitate! the amount of pain cannot exceed the relief when you get your new teeth!
I wish you the best of luck!
MeAndCherubism7 karma
I mean, I would have to pay them back by paying tax and doing an effort for the country.
cheekia6 karma
I'm guessing means he 'owes' the government like you say you owe someone for helping you
e.g "Thanks man, I owe you one"
matthes53 karma
Congrats on your successful surgeries :) What would your long term prognosis have been without surgical intervention?
MeAndCherubism4 karma
Thank you! A long term prognosis would be me with really bad teeth, not be able to eat what ever I wanted. And of cause it helps on my self confidence.. :)
ergingspud3 karma
Is there any kind of complication you'd have to worry about down the road as a result from surgery?
MeAndCherubism3 karma
Yeah, all the attention from the ladies. Haha.. Nah not really.. Only that my children would probably get it too. But someone talked about isolating that gene. So have to research it.
Bronco912 karma
I read your last AMA and was wondering if you were still set on not having biological children of your own? Seems like they could isolate the genes responsible and simply take a sample of your sperm and find one that doesn't carry the trait.
But my real question is, what is the job market in Denmark like? My sibling's girlfriend is Danish and is considering moving there. Are Americans welcomed, truly?
MeAndCherubism3 karma
Thank you for taking your time! I would like to have children at some point, but I haven't researched if it's possible to isolate the responsible genes. But yeah, if that could happen. I would probably do it! Job market in Denmark is decent depending on what type of job you want to do. But I think it's pretty similar to the rest of Europe! Americans are always welcome! I know a few people who actually moved here from America!
MeAndCherubism3 karma
I haven't changed my jaw line. My jaw looked a lot bigger when I was a kid, and now when I grew up, it kinda fit better to my body size. But I had the Quagmire face when I grew up..
But yeah, I don't really miss the way people stared at me back then.. People stare a lot when they see something they haven't seen before. And kids do point it up straight away.
moldyfig2 karma
Given that this is hereditary and seemed to be quite painful and a chore for you, would you have kids?
MeAndCherubism2 karma
Someone has mentioned that you might be able to isolate the gene. I haven't researched this yet. But if this is possible I would do it 100%
moldyfig1 karma
Honestly, all this isolating genes and breeding against them really isn't creating healthier dogs. It's actually decreasing genetic variability, creating less healthy dogs. A study of purebreds (I think it was) found that 10,000 dogs have the same genetic variability as 50 humans. We need to actually start considering outbreeding various breeds. Look at the famous boxer corgi experiment to get short tailed boxers that look and act like boxers without having to dock their tails. Or look at the Dalmatian Pointer cross, that eliminated the problem of uric acid buildup and painful stones in Dalmatians that no longer had the gene, thanks to the Pointer. These dogs look like Dals, act like Dals, and can pee once again and not die painful early deaths from bladders just chock full of stones.
MeAndCherubism2 karma
This is just plain weird! I don't believe I have to actually reply to this.
B-E-A-S-T-I-E1 karma
Oh, this is like Robert Z'Dar, yes?
Imaterribledoctor1 karma
Why Minnesota? Not first on most people's list when they're visiting the United States. The twin cities are nice, however...
MeAndCherubism1 karma
I had met some people at a dorm some years ago, here in Denmark, and I wanted to meet up with them. So one was located in Virginia and the other in Minnesota. So that's why I went to Minnesota! :)
LeoNegroIII64 karma
How does it feel, turning into a handsome Morrissey look-alike?
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