I'm the guy with Cherubism - AMA
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!
And me at my very first baseball game! Twins lost by the way.. Picture
My Proof: http://i.imgur.com/utWqkwC.jpg