Arrhythmia

Man Survives Rare Skin-Shedding Disease

April 29, 2008

 Here’s an article I’d like to share with all of you. .

 

Harlequin Ichthyosis Usually Fatal At Birt

SAN DIEGO — A young San Diego man is truly a medical miracle.

 

 


 

 

He was born with 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."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.

"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," Gonzalez told 10News.But those reactions didn’t hold Ryan back — 18 years later and he has grown into a young man.Ryan’s dermatologist, Dr. Susan Bioko, said, "Ryan is the only one I know his age that has not only survived, but how many people do you know that are triathletes?"Ryan is training for his second triathlon. He swims three days a week in the pool and every Saturday in the ocean.

He invited 10News anchor Carol Lebeau to workout with him at La Jolla Cove.Even though the salt water stings Ryan’s tender skin, his stroke is strong and his determination is nothing short of amazing. 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.A few weeks later, Ryan competed in his second challenged-athletes triathlon.Everything Ryan accomplishes is a miracle, considering how he started out and how far he has come.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.

 

* Reading things like this, make you despise all the people out there who worry so much about how they look and yourself, to an extent, for being so shallow. Also, you feel helluva thankful that whoever we pray to, ie My Big Blue Ball of energy, has made us perfect and capable and well-structured.  Let this be a lesson to all bimbos and himbos and anyone of you who feel that looks matter and that you don’t look good enough.

  


Posted by ashyville at 6:40 pm | permalink

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