I am a 23yr male with a rare disorder called Cutis marmorata telangiectatica congenita and extreme body asymmetry. AMA

Just wanted to say that it takes a lot of balls for anyone to put their picture up on Reddit - let alone, when someone has a medical condition. Props, wally. Talk about "not a single f*ck was given"

Ill give ya one better there. I posted this same thread, more or less, to 4chan last week. I just have learned to accept myself and an okay with sharing with whoever wants to know.

To 4chan? Now I just think you're a masochist lol

I bet it cost a lot to purchase a wheelbarrow large enough to carry your gigantic balls

Honestly they are not as bad as you would think. I posted to /soc/ not /b/ so radically different people. That was actually a really fun thread that lasted a good couple days and inspired a lot of people to stop complaining about things for all of about 5 minutes. I even got my own chan name from them. To me thats about as much respect as you can get from 4chan.

what name did they give you?

lopsidedchan

i don't have a question, but wanted to give you some LoVE! stay strong.

Love yo, love.

I just want to say that you seem like such a nice, cool guy. You dress great, you've got it down pat, you've got a good job, your own opinions, you're super open and not embarrassed about yourself, great grammar and an even better attitude. It means eff all coming from some idiot on the internet you've never met, but in the most honest way possible, a lot of people could really do with taking a leaf out of your book.

It took a long long long time to get this way. The one thing that i hope for other people is that they can be open with themselves and realize that even if they are different they are pretty damn good themselves.

Thank you though. Even as a random person on the internet it still means something.

I really, really want to hug you and then just hang out with you. Partly cos you just seem so cool, and partly cos I've never met a welder and I'd love to know how welding works!

Aww well if you ever make it up to northwest minnesota i love meeting new people.

I couldnt tell you exactly how welding works either but im pretty sure its powered by cursing and anger.

"Grrrr.... Rawrrrr.... Work gosh darn you.... Aaand it's done! Another happy day as a welder. Hum hum :)"

yeah thats pretty much it.

Does that mean half of your penis is larger than the other half? If so, by how much?

yeap sure does. Why its hard to see because of foreskin and such if you feel it you can tell where it bulges more on the left side. The length however is only off by maybe a couple millimeters.

This just takes the bizarre factor to a whole new level. I am very sorry if this sentence offends you. That the body is typically so "precise" that the penis can be affected like this is astounding.

no offence at all man. Its pretty freaky but yeah straight down the middle. Its pretty amazing.

Your attitude towards the situation is fantastic - you don't give off the aura of a 'victim' or whatever. The reality is, you are in a different boat to a lot of us, as you have a unique condition...but you could easily sail that boat miles away from the rest of 'us', and the distance would exaggerate any potential social difficulties..instead, with your down to earth, super chill attitude, you're pretty much sailing along with the rest of us. Dismal metaphor but I hope you get what I mean.

I'm saaaaaaaaaaaaailing away. Set and course for the oooopen sea.

Honestly though it took me a long time to get to this. There was time were I was in a bad place and seriously considered killing myself. There were times where i was into some heavy drug use. Then over the years i just sort of learned to accept it. I found a group of friends who loved me and i loved them. Honestly i could have gone either way but i ended up like this and hope that people can learn something from what im sharing.

Thanks for reading!

Just curious, are you still using any drugs at all?

No not anymore. I think in the past four years its been maybe two pipes and a tab of x? I pretty much stopped. Just not for me anymore.

Just wanted to say you are fucking awesome and I greatly appreciate you posting this. Until this point I had no idea this sort of condition even existed.

Good luck with everything in the future, but it sounds like you're doing well already. Cheers, bro.

Thank you very much! Hope you enjoy reading.

When you get a boner does it hurt? I can imagine the big side getting bigger than the small side and making it bend or something.

nope not at all. It works pretty well and cant say i have ever had any serious complaints about it from others.

Yo baby you want the thick side or thin side tonight?

Damnit i laughed at this more than i should have. Props to you.

I bet the ladies at very least want it in them to figure out how it feels hahahahahah wish I had curiousity on my side....

Props

The second girl I was with ended up playing with it for about 10 minutes just saying whoa. Im sure it feels a bit different.

Not an insult, but if you can get laid with your condition, than the theory that it just takes the right amount of confidence and personality has been completely confirmed.

No insult at all. Really so long as you can be comfortable with yourself its just finding someone.

Using this line again but really. No matter what you look like, Someone will find it interesting enough to fuck.

Not trying to be a dick but has anyone ever called you Biggie Smalls?

Well my dream was to become a rapper and use that name but sadly that was already taken.

How do you deal with the clothes issue?

i just buy for the left side. For the most part i wear dickies work shirts and jeans. As odd as it sounds i buy urban labels as they actually fit me a heck of a lot better.

http://i.imgur.com/GLYPS.jpg typical day of dress.

Wow. Honestly If I saw you on the street, I would never be able to tell. Maybe some mild suspicion on "that guy looks a little weird."

What about shoes? Are your feet the same size?

Thats why i dress the way i do. A lot easier than trying to explain to everyone you meet.

I could wear a smaller shoe on my right foot but thats more money than i would want to spend so i wear the same and just pad the right shoe a tiny bit so my toes arnt flopping about.

Seriously. You look good, bro.

Thanks bro.

It's nice to see a couple of dudes feel comfortable with a "you're looking good, bro". It's a nice day today.

I find that there really isnt any reason two dudes couldnt say they look good.

Agreed, you look both normal and attractive based on societal norms and preferences of north america - Congratulations on your effort.

Sadly I must say that even in north america no one loves fat dudes. Though normal yeah.

Not gonna lie, I prefer my men chubsy, they're way better for cuddles and tend to be less douchey (no offense to any slim non douchebags, I know you exist)

My god I am a cuddle whore. I dont care who you are just get over here and cuddle while we watch crappy scifi. Dont know why just something i really enjoy. Sexual or not.

Nice man you pull that look off very well.

Thank you. I try my best.

Just in case you've never heard of these people.

You should check out this website http://www.cmtc.nl/Public/EN/en_index.html . It is a dutch institution that is very interested in you, and you should be interested in them.

We offer our members from all over the world a free medical examination in the Netherlands. We know ways in certain cases how to arrange two free airfare tickets. Sofar members from ... and the USA have used this facility.

I have not heard of them. I think i shall learn more about them now however. Thank you much for that link! Though it seems i have to pay to become a member but ill see what its all about.

I am a 13 yr, old, as i grew up the left side of my ribcage has been shaped weirdly. Instead of convex it goes in concave and pokes at the bottom. Im real skinny and dont have a whole lot of a chest(not much fat/muscle) the left side of my chest is considerably lower than my other side. Ive always been very self conscious about it and hated pool/ beach etc. because people saw my chest. Seeing this post has brightened up my day! From now on I won't let it bother me and I will be happy the way I was made. Thanks OP :) first reddit post

You are who you are. And you know who you are? You are a very awesome and special person. Dont let how you look get to you. Im sure you are an amazing person. Dont let anything get to you!

Someone buy this guy all the drinks.

I think i would try to drink all the drinks and that wouldnt turn out very well. I get a little bit....touchy when drunk

Hey, I work in Genetic Medicine at a university medical school. I can scout around for some literature tomorrow, see if I can find anything you might find useful?

That would be awesome, thank you very much. If you need any specific information feel free to PM me.

No worries. I might forget so feel free to prompt me. It's so easy for us to see papers and reports that it's kind if sad to realise that this stuff doesn't always get to those who might need it!

Well if you forget its no big deal. It would be nice to know if there has been anything published on it though.

Came for the pictures, stayed for the knowledge. Also, nice tats.

Thank you.

Dont mean to be rude, but i think you could pull off one hella charger haloween costume

There was a guy on 4chan that mentioned corprus from elder scrolls.

Personally though, I am hoping for a nice apocalypse here so I can make a nice leather costume that exaggerates my body even more so I can raise a gang and rule the wastelands

Not if i raise one first!

I think I would have the better name though. I mean I would have a theme to go off of.

Woh woh woh, were talking about a nuclear apocolapse, everyones going to have something going on with them. It all likely hood, the radiation will supress your condition anyways

My god wouldnt that just suck. THE WORLD IS OVER! ....HOLY FUCK IM NORMAL!

Are you two people that were fused as embryos?

God I hope not. That would be a bit too creepy even for my standards.

You should tell people that's what happened though. Say that your two sides are vying for dominance and then change voices and shout at yourself.

If i ever go crazy i hope its like that.

Honest question:

Which side does your wang resemble? The big leg, of the little leg?

Honest answer. See for yourself: penis

For those who do not click its just a pretty average sized penis with too much foreskin. It works for me.

I don't know what I expected.

Im not sure if there could have been any more warning.

I was secretly hoping for a picture of some cuddly corgi puppies.

I think thats what we all hope for.

You have won IAMA. A picture of your fucking dick. Awesome. Just awesome.

Wait do other people not post pictures of their dick? What about that aziz guy?

Lots and lots of upvotes for yoooou. Like so many others have said, thanks for this AMA! Very educational, witty and interesting. :)

Thank you. Glad you have enjoyed it.

As a female, I can say that's got some decent girth. Props to you!

Why thank you.

I'm a straight guy. It's a penis.

It sure is buddy. It sure is.

I was quite curious about this too, and surprised to see that you actually answered with a pic. Looks pretty normal to me, and I've seen a lot of them, haha.

It takes major balls to do something like this. Props to you (not just for the pic, but the whole AMA), and I hope you find the specialist you're looking for.

Thank you. I hope there is someone out there who has been researching this for their whole career and never found a living person with it and somehow they find this thread. One can dream.

And yeah its pretty normal. Works pretty good and never had any complaints about it. Its not the biggest but I have learned to use my mouth pretty damn well so it evens out.

As a straight male that is the most attention I've ever given to a penis that is not mine. This has been a very good AMA and you've come off to me as a really cool, down to earth person who has accepted this and carried on like it ain't no thing. I've had medical issues, not as perplexing as yours, but I know how tiresome it can be to be asked about stuff so kudos to you for handling this so well.

Thank you for giving my penis some attention. It likes it very much.

I am glad this AMA is as good as it is. Im just glad that people are interesting in my condition and happily I have found a few contacts that might be pretty useful. Thanks for reading it!

Good luck homie.

Thank you!

I created a throwaway two minutes ago just so i could tell you this with all the non-creepiness i can muster: i'm not sure if it's just the angle and lighting of your photo or what, but you have a pretty nice-looking dick. :) congratulations.

edit: damn, painahimah beat me to it.

Thank you!

That was a ballsy move posting a picture of your dick on reddit, but it seems like you make no bones about it.

Just my penis.

I knew that this type of question would come up at some point during this AMA... I mean... for crying out loud the highest rated comment on the astronaut AMA was about whether or not he wanked in space and where the masturbatorium was. However, I'm honestly shocked that you're one of the only OP's who have ever ever answered this type of question. Props dude... hella props.

Not even the astronaut posted his dick? Jeeze wasnt one of the rules be prepared to answer anything?

I have never heard of this before. So you haven't seen a specialist, does that mean that you self diagnosed? (not questioning your diagnosis)

Also, what is you reason for not seeing a specialist? You seem fairly open about your condition on here.

Do you work? Does your condition affect work?

No i was diagnosed as a baby but after age 12 due to various reasons and such i never saw a doctor again. Besides my pediatrician I am not sure if there even is a specialist that deals with stuff like this.

Yes i do work. I was a CNA for 4 years now i work in welding. Besides walking a bit funny it doesnt affect me much at work.

[removed]

non union welding atv and utv frames. I couldnt work for a union again. I was a teamster in high school and got fucked pretty good.

-- but after age 12 due to various reasons and such i never saw a doctor again

Would you consider seeing a specialist now that you are older? I'm pretty sure SOMEONE out there knows this stuff....

Also, I wasn't assuming that you would want to see a specialist for looks, I was meaning more for your long-term health!

Although, now that I think about it, looks might be something you would be interested in talking to them about.

ENOUGH RAMBLING! JUST POST THE FUCKING QUESTION ALREADY!

Oh I sure would see someone if i could find someone. Im actually damn afraid of what could go wrong with me. Being a fairly rare thing who knows what could go wrong.

If i could find some young doctor who wanted to make something of his career by publishing an exciting new topic and not charging me for it I would be all over it.

How did this affect your upbringing and your romantic life?

I grew up hating myself for a very long time. On top of looking like i do i grew up white in heavy heavy heavy hispanic neighborhoods. I never had friends for a long time and was pretty much a social outcast.

It wasnt until highschool when i met gothkids and found a group that loves freaks that i actually had friends and learned to accept myself for what i look like. These days im very comfortable with things and have a good assortment of friends.

Romantic wise though its a little slow. I didnt lose my virginity till i was 20 and still have a hard time getting close to people in a physical setting. I have had a couple good relationships on both sides of the gender aisle but never anything serious.

Dude 20 is not that late to lose your virginity... hell you're doing way better than a larger percentage of the people on here.

that's true. Considering for the longest time i didnt think i would ever have a chance with anyone i guess im doing okay.

In whatever condition one may be, confidence is alway's an admirable trait and the key to general succes, happiness and sexiness. A genuine smile and caring attittude about who you are and other people, always -in most cases-, have a positive outcome.

We cannot change the cards we are dealt, just how we play the hand

Damn good video.

I love it that you gave props to the gothic community. We are all outcasts with emotional scars, so most of us are very willing to give everyone a chance. Freaks we are... All of us. Much love.

They are some great people. Some bad apples same with any other group but as a whole a great group of people.

I personally think 20 is a perfectly appropriate age to lose your v card. You're doing a lot better than lot of Redditors. :P

I try. Same as on the threads I made on 4chan. I did it. You can too!

Hey man, V Card at 20? You hands down beat most redditors!

INTERNET HIGH FIVE!

highfive

"nether bits" lol

Does this condition effect your eyes? (is your left eye larger?) If so, can you see better/farther with your large eye?

Do you have trouble with mobility?

Thanks.

the left eye is a tiny bit bigger but the vision is the same in both.

I walk a bit funky because of my hips but if i concentrate on my gait it would be fairly hard to tell.

Thanks for answering!

Thanks for asking!

does your smaller side get fatigued earlier than your larger side due to the muscle and bone differences? also, has the condition gotten more or less exaggerated with age? thanks :)

Not really. I work with both my hands so they stay pretty even in terms of endurance.

The skin has stayed pretty much the same since puberty. The asymmetry though has gotten a bit worse especially as i have been working towards losing weight which has only seemed to have been lost from the right side.

That's crazy that the weight only gets lost from the right side. Does working out to build muscle help make the asemetery better or do the small bone structure make it impossible to ever get it to match better?

As far as i can tell i will never be able to get it to match. Just bone size alone will keep it at odd sizes. I tried to get a picture of my neck to show the difference in just the collar bone and shoulder height but cant seem to get one right.

It's fascinating that you only burn fat from one side. I know from working out the body doesn't target fat when it burns it according to the excersize, the body just takes it from where it needs it. In your case, it seems to prefer to lose it from the smaller side as if the metabolism on that side is favored and quicker. Sounds like a nightmare for getting in shape.

Glad to hear you found some friends in the goth community. I was a skater kid growing up in a redneck town. I always found friends in the punk and goth scenes myself, they have always been pretty accepting

Yeah i can honestly say that them then the group of people that i ended up being lifelong friends with probably did keep me from killing myself as a teen. They really are a very accepting group.

The high school years are hard for most of us, and made even harder if you are what they consider "different". I'm glad you didn't kill yourself for the sake of a few mean spirited people and were able to find your place. I use to just hate the fact that my hairline started receding in my teens. It sucks being that young and losing your hair, but no matte how bad things seemed, I would try to remember that I've been through a lot worse things in my life, and there are many other people who are going through worse.

I'm glad to hear you don't let this disorder ruin your life. It's not easy pulling yourself out of depression to improve your life.

Thanks. One of the reason i did this AMA and the few threads on 4chan was to show that no matter what you look like, how you think you are, you can pull through it and be a decent person at the end.

Really think someone needs to write a book that is given out to all 13 year old titled "the next 5 years are going to fucking suck. Enjoy!" that explains that once you get out of high school things are better.

We have a TV programover here in the UK called 'embarrassing bodies' it's a bit of a misnomer as you shouldn't be embarrassed but it's a good, medically accurate (it's presented by three doctors), informative and entertaining show.

Have you heard of it? I believe they are in America, thought of applying to appear on it? @doctorchristian is one of the presenters if you wanted to look him up on twitter?

Basically if you don't know, they send you to specialists who can help (if you wanted it of course?)

Anyway, thanks for this AMA. TiL. :-)

EDIT: this is their page. http://www.channel4embarrassingillnesses.com/

Doctor Christian: http://www.drchristianjessen.com/

Doctor Pixie: http://www.pixiemckenna.co.uk/

Doctor Dawn: http://www.drdawn.com/

This was actually mentioned in this thread. I just finished sending a message to one of the documentary editors. Ill see if i cant find another contact email on their site to send something too.

Sadly out of principal I dont use twitter but if you want to tweet him this thread I would love to hear from them if i cannot get ahold of them on email.

As someone in the dental field, I gotta ask whether the teeth in the 2 right quadrants are radically different from the teeth in the 2 left quadrants. Also, does it likewise affect your tongue?

/shameful answer

I havent been to a dentist since 12. I had a bit of a terrifying experience and am now a total pansy when it comes to someone putting their hand in my mouth. As far as i know my teeth are where they are supposed to be in my mouth but honestly I cant answer this one for you.

Though I can say that the left side of my tongue is larger than the right same with jawline and skull.

Is there any reason that you haven't seen a dentist or doctor in over a decade?

Regardless of medical conditions, it really is important to be seen for regular checkups by both dentists and doctors.

Given that you do indeed have a condition, you don't want to be blind-sided by something which really causes you issues.

If $ is a factor, I will be happy to help you find a more affordable dental clinic.

If you have anxiety about visiting a dentist, just call in and explain your situation. Don't forget that dentists have been in the patient chair at some point. Most of us have gotten shots and fillings, so we know how you feel. A good dentist will work with you to overcome any fears, which are very common and usually developed as kids. Just remember that you are in control and that the dentist will absolutely not do anything to cause you pain. In fact, it is illegal to do anything unless you want them to. At the first appointment, they will only look around.

For both medical and dental problems, prevention is always much easier than dealing with pain after the fact

doctor because I do not have medical insurance. Before because of issues that I would rather not get into. Lately because I messed up some stuff and now have to wait till December before I can get it again. Honestly I am scared that there is something majorly wrong that i wont know about because I havent had a checkup.

For the dentist when you have a 90 year old man with his hands in your mouth go and die on you. Well you tend to be scared for life on that. I try and keep on my teeth by brushing, flossing and the like but i know i really need to get some work done. Also I dont have dental insurance and up here in rural minnesota there isnt much in the way of low cost health care.

when you have a 90 year old man with his hands in your mouth go and die on you

Jesus like it isn't daunting enough D:

I will never forgive my father for making me go to his childhood dentist.

Could you get like half your body liposuctioned so the difference isn't so great? Was that fucking retarded? It seemed fucking retarded

Cost a lot of money that i dont feel like spending on that. It would help the fat layer but the muscle and bone would still keep it uneven.

No stupid questions here.

Has there been any evidence that people with Cutis marmorata telangiectatica congenita and extreme body asymmetry have a shorter life expectancy than the average person? Are organs larger/smaller? Does this affect your heart at all? lungs? Or subject to increased risk of disease or anything? I hope this isn't too personal.

No idea. I havent been able to find any study about anyone with it older than myself. I know that my lung is larger than the other. Im not sure on other things such as kidneys or intestines and the such but im sure they are. I have an increased risk of ulcerations on my legs which is something that i am currently dealing with. I have had a wound which has yet to heal fully after nearly two years. Not a damn thing i can really do about it except wait.

almost no such thing as too personal in this thing. Im here to answer what people ask to the best of my ability.

I mean, if your non-healing wound has something to do with your condition then I don't know how this would work. But for a little while a while back, I worked for a company that makes synthetic living skin that grows onto you and heals your pervasive wounds. Fucking science, right?

Holy shit thats awesome. Thanks for that link. Im going to see if i can get me some of that science.

When I was in basic training, my battle buddy ( their term not mine) had this. Not to this extent, but half of his body was larger than the other. It really affected his physical fitness. However he pressed on and proved he was fit for the military. I called him a few years later and found out he had a surgery on his leg to correct a vein issue and ended up helping out his overall physical fitness. I can only imagine how hard this can be for you. Just remember, reddit is here for you.

Well im just glad i can share. Reddit has been good to me over the years. Time to give something back. If you are still in contact with your buddy see if you can get him here. I would love to meet someone else with a similar condition.

why have you never seen a specialist to see if there is treatment?

Never found one. Only 200 reported cases according to wikipedia, so finding a specialist is a bit hard.

Who's your favorite fictional detective?

Dick Tracy.

What other comics do you like?
Can I draw you a tattoo? And if it's good, will you think about getting it put on you? edit: good meaning you like it and think it's rad.

Punisher, Cable, deadpool are my big three. Batman, dick tracy and most of alan moores stuff i dig as well.

Sure most of my tattoo's are just stuff that the artists wanted to do. Im always up for something new inked into me.

Thanks for doing this AMA! I was looking forward to it!

How does this condition affect clothes shopping? Do you have to have things specially tailored or are you able to find things in regular stores?

Have you ever met or heard of anyone else with this condition? I didn't even know it existed until today!

Does this affect your balance at all?

Thanks for being so brave with the full body shots, too. It really gives more information about what you're dealing with!

No problem!

Doesnt really affect shopping for clothings. As i said in another post i tend to buy a litte bigger than i need as it helps hide fairly easily. This is a typical day of dress for me. http://i.imgur.com/GLYPS.jpg

I cant balance on my right leg at all. Like not even close to even pretending to be able to.

Not many people have it. According to the wiki there are only 200 reported cases. Which is something that im sort of glad of as its a shitty thing to have to grow up with.

You certainly dress very well, so that's no concern! :) And hey, I can't balance on my right leg either, but that's because I'm an uncoordinated klutz. And that's kind of crazy that there's only 200 reported cases. You should e-mail TLC or something, they would DIE to do a documentary about you. :)

lol if someone got a hold of me and wanted to do something i wouldn't turn it down but im sure they have enough emails from people thinking they are special enough to get their own documentary they would never see mine.

Thanks on the dressing right. I do like lookin decent. Whenever i have the opportunity to dress up i always take it. I can pull off a suit decently.

[deleted]

Well i am pretty dang open about it these days. I made a couple threads on 4chan that were pretty successful and you know how those people can be.

Ill look around the TLC website see if i can find anything on submitting myself. Worse that could happen is they say no, so its worth a shot.

If any of you are savvy on submitting ideas like this let me know.

[deleted]

ill send them an email. I wouldnt mind being an a BBC channel show. Thank you.

Your face looks unaffected. Is it? How about your eyes/vision? Thanks for this AMA

No right down the middle as well the left side of my skull is larger than the right. Its a bit less noticeable when you look at it, but if you were to feel my head then its very very noticeable.

Kind of a stupid question, but for some reason it is just interesting to me.

Are you right or left handed?

Right handed but there is a lot of stuff i do with my left as its just easier some time.

Stay strong dude! Respect for sharing. Honestly.. With clothes on it was almost impossible for me to tell. You look good anyhow dude. Stay positive and never get down on yourself!!

Thank you! I try and keep my chin up as much as I can.

Is one testicle larger than the other?

left one is noticeably larger.

I'm from the UK and you should totally get in touch with 'Embarassing Bodies'. They do things in America all the time as well, so it's definitely worth considering. Also, I know loads of people have said it but keep being awesome, you seem like such a cool guy :) I'd totally be your friend and we could weld stuff. Not that I can weld.. But still, you're a legend :) x

Thank you very much. Im actually writing an email to channel 4 to see if they would be interested.