News article: Man Survives Rare Skin-Shedding Disease

[Capernicus]

Before I say anything, I want to let it be known that I have been given permission to post this thread and the picture below. This is not meant to shock you, but to educate you.

"When I first saw Ryan, I just started crying. It just looked so bad," Gonzalez said.

Ryan was born with a rare genetic skin disorder called harlequin ichthyosis where the skin sheds seven to 10 times faster than normal. Ryan's skin is as hard as a coat of armor.

"All over him were these big thick scales with cracks. There was a little bit of hair and there cracks and fissure all through out," Gonzalez said.

Dr. Brian Saunders, a Kaiser Permanente neo-natologist, said, "When I saw Ryan I knew what he had and I was always taught what he had was lethal."

Saunders cared for Ryan during the first critical hours of his life.

"Because of the scales around the face, his mouth was open like a fish," Saunders said.

Ryan's tight skin was crushing his lungs.

While doctors and nurses fought to keep Ryan breathing, Saunders searched worldwide to find a way to treat him.

http://www.10news.com/health/3919722/detail.html

Infants born with the disease Harlequin Ichthyosis generally die between the first few hours of life and a few days later. The exact cause of the disease is so far unknown, and treatments are very rudimentary and under tested. It is estimated that 1 in every 300,000 infants are born with the disease.

So, would you like to see what harlequin infants look like when born?

WARNING: this image may shock you and give you some very horrid nightmares. You have been warned.

http://justsickshit.com/wp-content/u...harlequin3.jpg

If you would like to see more, you can simply google image search "harlequin".

Not pretty, is it? The eyes in particular are very disturbing...they have been described as coagulated blood the size of plums. >.<

I think it's amazing that Ryan has survived as long as he has and is a triathlete! I feel bad though, the salt water burns his skin...I admire this guys courage and strength. Way to stick it out for 18 years!

[sa5m]

That um.
Yeah, I wish I hadn't seen that picture.

But this is very amazing. I can't imagine how much this person must've gone through. Impossible.

[Señor Nobody]

For what it's worth, this man has my respect. It must have been horrible growing up with that disease.

[*Tsuki*]

Aww, that`s so sad.
He has my respect, as well.

He must be a really strong person to be able to deal with all that.

[Flah Blah]

At first I thought his eyes were kinda shaped liked little hearts (it's kinda cute if you can get over the skin disorder part and the first initial shock). He's a trooper, mega kudos to him.

[Acnologia]

There was a documentary on two girls with a disease similar to this, they had to take harsh baths many times a day to get the skin off. However, these girls were in their teens or whereabouts, so it must have been different. But their skin was red just like the picture in the article itself.

[Gero50]

Well in all honestly I can't help but almost be brought to tears. I was a shock but at the same time you can't help but feel so bad for him. I really hope he gets a lot of love from his family.

[Dead rose]

I dont want to see that picture i know it would be creepy O_O. that guy has a lot of courage to deal with all that

[Serpentarius]

why? why? why couldn't you just be the sexy girl of my dreams? nightmares...gonna just act like that was a stress doll

[Li Xia]

I salute the patient, for his strength and courage despite of his situation; also to his family for their stability. Hopefully find a cure for such type of disease.

[CrystalAce]

That pic was surreal. Though, the child's condition looked horrific, the eyes kinda reminded me of some kind of candy, not much of a nightmare, I must be crazy. But the guy (Ryan) has guts, and I give him credit for his hard work to take up a challenge such as triathlon. Some miracles do make us ponder about possibility in life, don't they?

[_-Anonymous-_]

such a horrible disease !

i respect this man.

[IFS]

wow that picture was seriously bad, but I share the respect everyone has for this man.

[sa5m]

There was a documentary on two girls with a disease similar to this, they had to take harsh baths many times a day to get the skin off. However, these girls were in their teens or whereabouts, so it must have been different. But their skin was red just like the picture in the article itself.

I saw that documentary. They had something different, not as serious as this one.

[MissAstaire]

He doesn't need our pity. And to say that you hope he gets a lot of love from his family is almost as if you're saying he shouldn't be. He has survived this long and gotten through every single day with his disease. He's very admirable. And I wish him all the best on his SECOND triathlon.

[Manhattan_Project_2000]

is pretty good too.

[Capernicus]

is pretty good too.

Ah, yeah I saw a story about him too. I do feel bad for poor Tree Man, and Ryan here, and I wish them all the best in their endeavors.

[~*Red*~]

Ryan has my utmost respect for surviving with this disease; he's a real trooper and it shows that you can overcome anything.

[Teddy2116]

Uh... I'm sorry this may sound cold-blooded, but I LOL at the pic. Its sad but I just couldn't help it.

[Manhattan_Project_2000]

Uh... I'm sorry this may sound cold-blooded, but I LOL at the pic. Its sad but I just couldn't help it.

I don't think there's anything lol-worthy about it per se but I can certainly understand having a thick internet-skin to any and all "shock" images, but then again I'm the sort of person that has read anti-abortion shock sites while eating waffles.

[Teddy2116]

I don't think there's anything lol-worthy about it per se but I can certainly understand having a thick internet-skin to any and all "shock" images, but then again I'm the sort of person that has read anti-abortion shock sites while eating waffles.

Well I know that its a really sad thing to happen to a person, but I mean I really don't show pity for something like this, I don't feel there is any reason to. The reason why i LOL'ed is cause of the eyes, I just couldn't help it.

[baseofnara]

Well I know that its a really sad thing to happen to a person, but I mean I really don't show pity for something like this, I don't feel there is any reason to. The reason why i LOL'ed is cause of the eyes, I just couldn't help it.

I understand why you laughed Teddy at this; it’s when it seems surreal. Some times when people see some thing that just doesn’t make any sense at all compared to normal life some people laugh. It’s a defense mechanism and it’s actually normal even if it’s cruel. Like people screaming when confronted with someone that has this or any other rare skin disease really. It’s similar to the fight or flight syndrome when people get in a violent situation, it's just more to protect your self from the thought of catching it. When you understand this, you realize you just need to understand how to protect your self instead of reacting over it. For my self reading this thread then seeing the image helped. I realized that it’s a genetic disease sense you’re born with it. It just looks pain full really and I hope they come out with a cure. Though to do that I think science and doctors would have to understand the human body more.

[.Tatty.]

i feel sorry for the guy ad respect him

well im sure he wouldent want mine or anybody elses pity to be perfectly honest

[Ramona Flowers]

...D:

srsly.. things like this scare the crap outta me now days, being pregnant and all I do is worry if Lydias ok. All the crazy things that could go wrong..

~shivers~

[Zodiac_Hart]

This guy has my respect, he is very impressive. Now if only some other people had the same motivation and will to live like he does...