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[tt_deeb]

I guess I'll give a little warning - the pic in the article might be a little too much.

http://www.newsnet5.com/health/3922477/detail.html

SAN DIEGO -- A young San Diego man has overcome the odds and has survived a rare skin disorder that is usually fatal at birth.


The birth of a child is a time of celebration and anticipation. Anna-Marie Gonzalez wanted what every parent desires -- a healthy child.

"I was just hoping that he had a little nose," Gonzalez said.

But when she first laid eyes on her newborn son, Ryan, she was shocked, reported KGTV in San Diego.

"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 throughout," Gonzalez said.

Dr. Brian Saunders, a Kaiser Permanente neonatologist, 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.

"We found a baby in England, who at the time was 2 years old and had been treated with a vitamin A derivative," Saunders said.

The drug Accutane had never been used on a baby, but Ryan's mom didn't care.

"I said, 'I want you to do whatever you can do," Gonzalez said.

The big, thick scales that were all over the skin became smaller and thinner. The drug kept his newly shed skin from hardening again -- but it was just the start. Ryan faced an uphill fight.

Growing up was difficult.

"Every time you walk out the door, you have to brace yourself for people's reactions," said Ryan, who is now 18.

For Ryan, managing his condition is a full-time job. Because his skin is constantly shedding, he needs to consume 7,500 calories a day. He tube-feeds himself pure protein every night while he sleeps.

"Ryan is the only one I know his age that has not only survived, but how many people do you know that are triathletes?" said Dr. Susan Bioko, Ryan's dermatologist.

Ryan is training for his second triathlon. He swims three days a week in the pool and every Saturday in the ocean.

Even though the salt water stings Ryan's tender skin, his stroke -- and his determination -- are strong. After swimming a mile in the ocean, he's still smiling.

Afterward, lotion was slathered on Ryan -- a ritual he does seven times a day to keep his skin from hardening.

 

[Mejilan]

That's incredible. Seeing pics of infants suffering from this disease brought me to tears the first time I saw it.

 

[BuddyC]

For Ryan, managing his condition is a full-time job. Because his skin is constantly shedding, he needs to consume 7,500 calories a day. He tube-feeds himself pure protein every night while he sleeps.

Whoa.

 

[Socreges]

He kind of looks like a super hero.

They could call him the Harlequin Hercules. Or... Scale Boy.

 

[demon]

Holy SHIT. He actually survived Harlequin's disease? I remember seeing pictures of Harlequin babies, and those things look like satan spawn. Truly atrocious. I feel sorry for the guy.

 

[Ecrofirt]

He's probably the antichrist. Good job, docs!

 

[belgurdo]

Holy SHIT. He actually survived Harlequin's disease? I remember seeing pictures of Harlequin babies, and those things look like satan spawn. Truly atrocious. I feel sorry for the guy.

Survivors tend to either look like him or like normal people with really fucking thick, cracked skin and pulled back faces. (<3 late night internet research.) I remember seeing a little girl at work with rough skin on her elbows; I assume was born with the full deal and her skin reverted as she aged

 

[jiggle]

I remember seeing a little girl at work with rough skin on her elbows; I assume was born with the full deal and her skin reverted as she aged

That could be psoriasis, especially if only on the elbows?

 

[Loki]

Picture #5 on that slideshow actually frightened me when it popped up-- it's just so bizarre-looking. You gotta feel for the guy; it's great to hear that he's leading a productive life. It would be all too easy for most people to wallow in misery and become depressed/suicidal if they were afflicted with such an illness.

 

[cvxfreak]

I'm glad that person survived.

Although that person looks like Rosie from Space Cases.

 

[Forgotten Ancient]

The advertisement I saw at the top of GA when looking at this thread. Coincidence?

These inspirational stories are amazing. We have pitchers with one arm, athletes with prosthetic legs, and triathletes with baby satan syndrome. Seriously though, the pics are pretty haunting, but the fact that he's able to have a good attitude and move on in spite of his defects is incredible.

 

[Fatghost]

I gotta get me one of those overnight pure protein feeding tube things this guy is using.

I'm having a hard time keeping my calories over 5000.

 

[beerbelly]

Great that he survived. But does he want to continue living like that?

 

[Baconäger]

Yeah, really. I would totally want to put a bullet in my head if I had to live like that.

EDIT: assuming the bullet could penetrate my thick skin.

 

[nfreakct]

Great that he survived. But does he want to continue living like that?

Obviously he does... or he wouldn't be where he is today.

His perspective on life is completely different from ours. When one needs to struggle like to that to reach where he is, one approaches everyday as a blessing, another chance to go out and live life. Nothing is taken for granted when surviving by itself is an ordeal.

 

[sc0la]

I assume was born with the full deal and her skin reverted as she aged

what jiggle said.