I'd so hate to be this guy

[sailornyanko]

http://img460.imageshack.us/img460/7256/holycrapwe8.th.jpg (http://img460.imageshack.us/my.php?image=holycrapwe8.jpg)

No, this is NOT a photoshopped image or a joke. This is a real human being with a pretty damn severe form of a genetic disease called Neurofibromatosis type 1.

I must say, I'd SOOOOOOO hate to be him. Is it even possible to partially correct his face with plastic surgery?

There's another gross photo of another guy with the disease, but it's just so damn gross I don't even want to post it. His case is so bad, it makes Werewolf disease seem like a really cool thing.

[Scandiadream]

Goodness gracious. Poor person. I had seen cases of that disorder before, but never so extreme.

[The Million Dollar Prons]

Oh man, now I'm disquisted with myself because I compared that image with the 1980's remake of the Fly.

[Suki]

http://img460.imageshack.us/img460/7256/holycrapwe8.th.jpg (http://img460.imageshack.us/my.php?image=holycrapwe8.jpg)

No, this is NOT a photoshopped image or a joke. This is a real human being with a pretty damn severe form of a genetic disease called Neurofibromatosis type 1.

I must say, I'd SOOOOOOO hate to be him. Is it even possible to partially correct his face with plastic surgery?

There's another gross photo of another guy with the disease, but it's just so damn gross I don't even want to post it. His case is so bad, it makes Werewolf disease seem like a really cool thing.

Why the hell are you poking at his disorder? Just leave him the hell alone. You didn't need to make a topic about this.

[ryushe]

Why the hell are you poking at his disorder? Just leave him the hell alone. You didn't need to make a topic about this.
Wow, never thought the day would come when I'd have to agree with Suki....






















...never

[VidelCoolGirl]

Why the hell are you poking at his disorder? Just leave him the hell alone. You didn't need to make a topic about this.
Ok, number one, there are two types, NF1, and NF2. About 1 in 4000 get it, and only in cases of NF2 do people get disfigured like that NF2 occurs only about 1 in 30,000 or so. Most people actually have it, but aren't aware of it. Actually, it takes some years for it to get that bad. Most people it doesn't actually start affecting you until you hit puberty or a little bit over. That picture there is a lifetime of the sickness, so its worse.

To be honest, (and oh no, Videl is getting personal) I have NF1. It hardly affects me, and by my pictures you've all seen, don't have an uncontrollable tumor on the side of my face. There are in general crappy side effects, but nothing aside from freckles and a thyroid. (I actually don't have one anymore.)

So yeah, before you actually make fun of people who have it, why don't you read up on it? Its not really so "woah WTF?" to make a thread about it; its just offensive.

[Raziel_MGS]

damn skippy videl

[VidelCoolGirl]

Also, thing is, thats a MAJOR case. Most cases (such as mine) is simple freckling and small skin bumps - that are really tumors of sorts - that are about a cm or so big. Some can be bigger, but it really matters on the case.

Several notes you might have it:

* 6 or more café-au-lait macules over 5 mm in greatest diameter in pre-pubertal individuals and over 15 mm in greatest diameter in post-pubertal individuals
* 2 or more neurofibromas of any type or 1 plexiform neurofibroma
* Freckling in the axillary or inguinal regions
* Optic glioma
* 2 or more Lisch nodules (iris harmartomas)
* A distinctive osseous lesion such as sphenoid dysplasia or thinning of the long bone cortex with or without pseudarthrosis
* A first degree relative (parent, sibling, or offspring) with NF1 by the above criteria

[Bernard_Monsha]

I am surprised no one has mentioned the most famous victim of this disease Joseph Merrick.

[HSaabedra]

I am surprised no one has mentioned the most famous victim of this disease Joseph Merrick.

Most people don't know he had it, you beat me to it.

[Alice Catherine]

That's really sick. You shouldn't make a thread about this.

[Bernard_Monsha]

Most people don't know he had it, you beat me to it.

I had to hold myself from makeing an ill timed Micheal Jackson joke.

[CrossboneGundam]

I thought this was going to be a picture of Brian Peppers.

[Suki]

Ok, number one, there are two types, NF1, and NF2. About 1 in 4000 get it, and only in cases of NF2 do people get disfigured like that NF2 occurs only about 1 in 30,000 or so. Most people actually have it, but aren't aware of it. Actually, it takes some years for it to get that bad. Most people it doesn't actually start affecting you until you hit puberty or a little bit over. That picture there is a lifetime of the sickness, so its worse.

To be honest, (and oh no, Videl is getting personal) I have NF1. It hardly affects me, and by my pictures you've all seen, don't have an uncontrollable tumor on the side of my face. There are in general crappy side effects, but nothing aside from freckles and a thyroid. (I actually don't have one anymore.)

So yeah, before you actually make fun of people who have it, why don't you read up on it? Its not really so "woah WTF?" to make a thread about it; its just offensive.
Why did you quote me? I already know what NeuroFiberomatosis is. I even remember doing a report on it in Highschool lol. xD

[guyverfanboy]

And I was just about to eat...

[VidelCoolGirl]

Why did you quote me? I already know what NeuroFiberomatosis is. I even remember doing a report on it in Highschool lol. xD

No, I meant to agree with you, I forgot to put that line in. You're okay, don't worry. :lol; Sorry about that. Makes me look like a prick.

[Leorio]

Ah thats not nice, i hope theres some kind of operation they can do for him!

[VidelCoolGirl]

Ah thats not nice, i hope theres some kind of operation they can do for him!

In a sense, there is. Face transplant; but at that point, it might be too late. If you catch them somewhat early, mattering on where it is, you can get them taken out. They grow back however. There's no medical cure or treatment thats said to stop it alltogether. It just matters on the person and how bad the case is.

Thing is, you never know how bad it can get or will get. In my case, I don't worry too much, but it still bothers me just having to wait to see how bad it gets; but it still does suck.

[Leorio]

So even if they take them out they will come back again, thats not nice!
You have this aswell Videl?

[Suki]

No, I meant to agree with you, I forgot to put that line in. You're okay, don't worry. :lol; Sorry about that. Makes me look like a prick.

Oh. :P

[VidelCoolGirl]

So even if they take them out they will come back again, thats not nice!
You have this aswell Videl?
Well yeah, but at the moment, its not bad. To be honest, I seem pretty lucky compared to a lot of other cases.

[Leorio]

Thats good then if its not too bad, i just read your earlier post.
I dont like seeing people with things like this, you would think with the way things are today cures and stuff would of been created for most things.

[Magami No ER]

Just because they're created or anything close to preventing such growths, it does not mean they're easily accessible by any means, plus a whole other score of hindering factors could come into play here. It's unfortunate.

[VidelCoolGirl]

Just because they're created or anything close to preventing such growths, it does not mean they're easily accessible by any means, plus a whole other score of hindering factors could come into play here. It's unfortunate.

Actually, the growths are on the surface of the skin, (they're inside the body, but high enough so that usually the smallest ones will still show. They're just under the skin) so they're somewhat easily accessible, its just some may get as so large so they can't do anything about it.

[Magami No ER]

By accessible, I actually meant the aid that's needed to help poorer people suffering such aggravated cases of conditions such as these.
But thanks for shedding so much like on the subject in this thread, Videl. =)

[sailornyanko]

I sincerely ain't on for making fun of diseases (heck I have a pretty major genetic disease myself though I don't have the time or cash to get tested because there's more than one disease that overlap the symptoms I have. Add to that at physically at first glance, you'd think I don't have anything).

But sincerely that photo just really struck me. It just shows that there's hundreds of thousands of people with genetic diseases around the world that don't have the cash or availability of doctors that are familiar with these diseases to get treatment on time.

At least I knew I had a disease decently on time so now I try to take better care of my articulations. The idea of getting major hip surgery at age 40 if I don't take care of myself just isn't my cup of tea.

Good thing you got diagnosed Videl. At least you know while you're young to watch out for symptoms and get treatment when a problem pops up. Also that you can get genetic assesment if you ever want kids.

[Suki]

I sincerely ain't on for making fun of diseases


I must say, I'd SOOOOOOO hate to be him.


There's another gross photo of another guy with the disease, but it's just so damn gross I don't even want to post it.


His case is so bad, it makes Werewolf disease seem like a really cool thing.

Really .

[Tidusauron12]

Really .

Quoted for neccesity.

[Raziel_MGS]

haha, the truth comes out

[Suki]

haha, the truth comes out

Hm, truth hurts don't it?

[JESSU]

I think having Fibrodysplasia ossificans progressiva would be worse. Your muscles turn to bone.You basically become a living statue.

[Rain]

I am surprised no one has mentioned the most famous victim of this disease Joseph Merrick.

Wow, I didn't think I'd ever see that name pop up again. I watched a documentary about "The Elephant Man" when I was ten-or-so, and you could only imagine how strongly I sympathized with his experiences as a freak show "exhibit."

Most people don't know he had it, you beat me to it.

How can one not know that Joseph Merrick had neurofibromatosis type I? Seriously, Joseph Merrick's physical deformity was "beyond the obvious."

I thought this was going to be a picture of Brian Peppers.

Brian Peppers is another matter entirely. :lol:

[Nano]

That's terrible, I feel bad for the guy.

[Bernard_Monsha]

At least there was no a picture of elephantiasis or even worse Loa Loa.

[Mooserocka]

i thoguht it was elephantitus. if thats even real i knwo nothing bout deseases or hereditary illnesses . But yea that most is fuked up even for moose

[dr ochanomizu]

The neurofibromatosis manifest in minor to severe forms; it can be in the form of wart like appearances to more disfiguring images. The best way to handle an anomaly of nature is not to desist from discussing the subject but to educate the problem to the public. This was well done in the 1980 film, THE ELEPHANT MAN, directed by David Lynch. It’s a biography, based on the story about a disfigured man, John Merrick, who was forced to eke out living in Victorian England in a freak show.

The movie portrays how disease affects a toll on the individual himself in physical and psychological ways, but also demonstrates how public interacts to deal with someone afflicted by this pain. The pure disgust of the public to handle the problem by beating the daylight out him to liberal sympathy awarded for helpless babies. The way how John Merrick felt about the treatment he received from the general public about his condition was, I think the best line in the film, as I recall, to paraphrase“…I am a man, not an animal.”(It’s been decades since I saw this film.). The essence of dignity of man is retold in beautifully.

Here is more information about the condition and the bio on John Merrick:

http://en.wikipedia.org/wiki/Joseph_Merrick

TS

[VidelCoolGirl]

Didn't John not have NF1? It was a sickness almost like it, but there was some gene that was different.

[dr ochanomizu]

^I think you are right. I see what I leaned in school is no longer valid about John Merrick; it appears the conventional thinking once placed his affliction by nerurofibromatosis, but now I see in Wiki that he had Proteus syndrome, without involving the nerves.

TS

[Lord Dagoth]

my dad died of this disease you jerks

[VidelCoolGirl]

my dad died of this disease you jerks

Most people here aren't being jerks about it. I'm not being a jerk about it (Since I currently have it) and most people are trying to be understanding of this sickness. I am sorry about your father however. This is a painful sickness for the person and the people around them. To be honest, since most don't understand this disease, its hard for them to grasp something as painful as this. (1 in 4000 or 1 in 30,000) get it, so its not something you see often.

To be honest, since this kind of thing would be hard for you (and then to read this thread) you can PM or AIM me at anytime. Even if he has already passed away...

[fujyoshi]

wow that scared me....

[tenshi_a]

[looks at photo]

um... that must really get in the way of him living his everyday life, and it looks like it's getting worse and he'll lose his eyesight... but honestly I don't think he's scary or looking at him makes me feel disgusted, repulsion or in fact, anything negative...?

And I'm scared of pretty much *everything*... particularly medical issues!

People's reactions.... hmm.... strange, aren't they?

[ecchi]

You shouldn't have posted this as it's rather disturbing and it's not funny to make fun of someone's genetic disease. Imagine his life...:(

[master terrence]

This is like a month old, why did you bump it? :blink:

[Ikari Warrior]

two months old, which is old enough for this thread. If you want to raise awareness about this disease, fine. But the way the OP did it; this thread was simply not implemented with civil discussion in mind. It's no surprise it petered out, and it shoulda done stayed that way.

[Evil_Koala]

That'd be great. You could hide in peoples' closets and then jump out when they get ready to go to bed.