Warning

 

Close

Confirm Action

Are you sure you wish to do this?

Confirm Cancel
Member Login
Posted: 1/13/2006 9:20:43 PM EDT
Okay, I for one see all my problems as much smaller now...

link to story and slideshow

Man Survives Rare Skin-Shedding Disease
Harlequin Ichthyosis Usually Fatal At Birth


MEDICAL MIRACLE
Man Defies Odds Of Deadly Skin Disease
Man Lives Full Live Despite Rare Skin Disease

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.

click on the link and view the slideshow...if you dare...

Link Posted: 1/13/2006 9:41:51 PM EDT
And to think some people complain that not being permitted to have a Drivers Licence keeps them from "Traveling."

Wussy's.

Link Posted: 1/13/2006 9:49:30 PM EDT
7,500 calories a day?! Good Lord........
Link Posted: 1/13/2006 9:52:35 PM EDT
[Last Edit: 1/13/2006 9:52:56 PM EDT by AyeGuy]

Originally Posted By Specop_007:
7,500 calories a day?! Good Lord........



Imagine needing so many calories that you have to tube-feed yourself protien while you sleep...
Link Posted: 1/13/2006 9:54:04 PM EDT

Originally Posted By AyeGuy:

Originally Posted By Specop_007:
7,500 calories a day?! Good Lord........



Imagine needing so many calories that you have to tube-feed yourself protien while you sleep...



Or just switch to an all MRE diet. Wouldnt need asswipe that way either.
Link Posted: 1/13/2006 9:59:20 PM EDT
I feel bad for him but admire his courage.
Link Posted: 1/13/2006 10:01:10 PM EDT
thats crazy.
Link Posted: 1/13/2006 10:04:41 PM EDT
Its like clockwork.
Whenever I feel like crap about something,
a short while later I see a blind person walking down the street,
or a guy with no arms working someplace, or a quadraplegic shopping
at a supermarket, etc, etc, etc.

Never fails.

I have no problems.

Thank you God, and I hope you will keep those
who have that strength and courage to live life
in that way close to you forever.
Link Posted: 1/13/2006 10:07:48 PM EDT
Right on little alien dude, I don't think I could go one like that, it must be excruciating.
Link Posted: 1/13/2006 10:10:48 PM EDT

I wept because I had no shoes until I met a man with no feet.
Link Posted: 1/13/2006 10:16:10 PM EDT

Originally Posted By ARDunstan:
Its like clockwork.
Whenever I feel like crap about something,
a short while later I see a blind person walking down the street,
or a guy with no arms working someplace, or a quadraplegic shopping
at a supermarket, etc, etc, etc.

Never fails.

I have no problems.

Thank you God, and I hope you will keep those
who have that strength and courage to live life
in that way close to you forever.




+1



­

Originally Posted By GiggleSmith:

I wept because I had no shoes until I met a man with no feet.




+2


Link Posted: 1/14/2006 1:57:57 AM EDT
yeah sometimes I have to remind myself how blessed myself and family and loved ones have been to this point.
Lots of kids with terminal illnesses and people with handicapps and such who could teach a lot of us many great characteristics such as determination and perserverence, humility, being content, ect......

I also had a good friend who was shot with a .22 and paralyzed from the shoulders down, and caring for him a lot, since he just lived down the street, put a lot of problems into perspective.
I admire people like the guy in the story, ryan, and others.
Link Posted: 1/14/2006 3:00:20 AM EDT

Originally Posted By LArifleMAN:
Right on little alien dude, .



WTF?
Link Posted: 1/14/2006 3:04:19 AM EDT

Originally Posted By HillBillySasquatch:

Originally Posted By LArifleMAN:
Right on little alien dude, .



WTF?



Link Posted: 1/14/2006 3:19:05 AM EDT
Saw that on TV a while back.

Makes me ashamed of myself, my life is so much easier yet I'm doing so much less anyways.
Link Posted: 1/14/2006 3:20:56 AM EDT
God Bless you man, you have the courage to inspire and make us all LOOK , and Think and Count our BLESSINGS daily
Link Posted: 1/14/2006 6:51:07 AM EDT
Damn...



Accutane ain't no joke, either.
Link Posted: 1/14/2006 7:58:08 AM EDT

Originally Posted By GiggleSmith:

I wept because I had no shoes until I met a man with no feet.



...So I took his shoes, since he didn't need them.
Link Posted: 1/14/2006 8:02:37 AM EDT
And we've got a thread going by a "disabled" guy who rides a motorcycle asking for advice on how to spend his "truckload" of money...

Only in America.
Link Posted: 1/14/2006 8:15:01 AM EDT
It was already stated but I'll say it again:

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.
Link Posted: 1/14/2006 8:52:10 AM EDT

Originally Posted By m-dc:
I feel bad for him but admire his courage.


+1 hats off to him.
Link Posted: 1/14/2006 10:00:04 AM EDT
Poor bastard.

Seeing people like him persevere (sp?) makes me want to kick the shit out of the healthy crackheads I encounter who are wasting their lives away.

I think he should be in the next Xmen movie.
Link Posted: 1/14/2006 10:20:31 AM EDT
Thank! I need a good slap once in a while
Link Posted: 1/14/2006 10:21:53 AM EDT
Link Posted: 1/14/2006 10:34:36 AM EDT

Originally Posted By Grivo_Mak:
Poor bastard.

Seeing people like him persevere (sp?) makes me want to kick the shit out of the healthy crackheads I encounter who are wasting their lives away.

I think he should be in the next Xmen movie.



That's easy to solve - I DO kick the shit out of the healthy crackheads I encounter who are wasting their lives away.
Top Top