Nov 1 - GIRL [B]WITH RARE DISEASE CANT FEEL PAIN.........[/B]

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 13 years ago '04        #1
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soulof585 11 heat pts11
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Nov 1 - GIRL [B]WITH RARE DISEASE CANT FEEL PAIN.........[/B]
 

 
PATTERSON, Georgia (AP) -- Ashlyn Blocker's parents and kindergarten teachers all describe her the same way: fearless. So they nervously watch her plunge full-tilt into a childhood deprived of natural alarms.

In the school cafeteria, teachers put ice in 5-year-old Ashlyn's chili. If her lunch is scalding hot, she'll gulp it down anyway.

On the playground, a teacher's aide watches Ashlyn from within 15 feet, keeping her off the jungle gym and giving chase when she runs. If she takes a hard fall, Ashlyn won't cry.

Ashlyn is among a tiny number of people in the world known to have congenital insensitivity to pain with anhidrosis, or CIPA -- a rare genetic disorder that makes her unable to feel pain.

"Some people would say that's a good thing. But no, it's not," says Tara Blocker, Ashlyn's mother. "Pain's there for a reason. It lets your body know something's wrong and it needs to be fixed. I'd give anything for her to feel pain."

The untreatable disease also makes Ashlyn incapable of sensing extreme temperatures -- hot or cold -- disabling her body's ability to cool itself by sweating. Otherwise, her senses are normal.

Ashlyn can feel the texture of nickels and dimes she sorts into piles on her bedroom floor, the heft of the pink backpack she totes to school and the embrace of a hug. She feels hunger cravings for her favorite after-school snack, pickles and strawberry milk.

That's because the genetic mutation that causes CIPA only disrupts the development of the small nerve fibers that carry sensations of pain, heat and cold to the brain.

"There are all kinds of different nerve cells that help us feel different sensations," says Dr. Felicia Axelrod, a professor of pediatrics and neurology at New York University School of Medicine. "You can have one sense removed, just like you can lose your hearing but still smell things."
Number afflicted unknown

Specialists such as Axelrod don't know how many people suffer from CIPA. As director of a treatment center that specializes in CIPA and related disorders, Axelrod has 35 patients with the disease on file. Only 17 of them are from the United States. Japan has the world's only a.ssociation for CIPA patients. It has 67 members.

In Patterson, a rural town of 800 people in southeast Georgia, John and Tara Blocker had no idea the disorder existed before they took Ashlyn to the doctor for a bloodshot, swollen left eye when she was 8 months old.

The doctor put drops in Ashlyn's eye to stain any particles that might be irritating it. The infant smiled and bounced in her mother's lap while the dye revealed a massive scratch across her cornea.

"They put the dye in her eye and I remember the look of puzzlement on all their faces," Ashlyn's mother says. "She was not phased by it by any means."

Tests by a geneticist led to Ashlyn's diagnosis. To have the disorder, Ashlyn had to inherit two copies of the mutated gene -- one from each parent.

Ashlyn's father, a telephone technician, and mother, who holds a degree in physical education, were largely on their own in learning to cope with their daughter's strange indifference to injury.

Many things they couldn't anticipate. Ashlyn's baby teeth posed big problems. She would chew her lips bloody in her sleep, bite through her tongue while eating, and once even stuck a finger in her mouth and stripped flesh from it.

Family photos reveal a series of these self-inflicted injuries. One picture shows Ashlyn in her Christmas dress, hair neatly coifed, with a swollen lip, missing teeth, puffy eye and athletic tape wrapped around her hands to protect them. She smiles like a little boxer who won a prize bout.

Her first serious injury came at age 3, when she laid her hand on a hot pressure washer in the back yard. Ashlyn's mother found her staring at her red, blistered palm.

"That was a real reality check for me. At that point I realized we're not going to be able to stop all the bad stuff," Tara Blocker says. "She needs a normal life, with limitations."

So when Ashlyn goes to her kindergarten class at Patterson Elementary School, she gets daily check-ups with school nurse Beth Cloud after recess. Cloud and Ashlyn's mother discussed having her wear a helmet on the playground, but decided it would look too odd.

And when teacher's aide Sue Price puts ice in Ashlyn's chili at lunch, her dozen classmates get ice in theirs too.

Infections with no outward symptoms also concern them. They heard of a case where a child with CIPA had appendicitis that went untreated until her appendix burst.

"It's a lot to take in. It opens your eyes to things you wouldn't normally think about," says Tara Blocker. "If she sees blood, she knows to stop. There's only so much you can tell a 5-year-old."

48 comments for "Nov 1 - GIRL [B]WITH RARE DISEASE CANT FEEL PAIN.........[/B]"

 11-01-2004, 01:28 PM         #2
GEO1378 
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she could be the ultimate f!ghting champ of the future...lol it would suck though not knowing if something is wrong with yourself.
 13 years ago '04        #3
doczdaname 28 heat pts28
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i wouldnt mind it for a day but for my whole life!
 11-01-2004, 02:04 PM         #4
AbstrakThaPro 
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-that's bananas-

-som'n like that has its pros and cons tho-
 13 years ago '04        #5
slimyellow 4 heat pts
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damn so i may be wrong but if i had her disease... i could walk outside nekkid in the snow and not feel sh*t???


thassssss wild
 13 years ago '04        #6
soulof585 11 heat pts11 OP
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so her s3x life is dead i guess...not 2 b funny)
 13 years ago '04        #7
deadman 
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 soulof585 said:
so her s3x life is dead i guess...not 2 b funny)
not really... it says she can't feel pain..... she can feel pleasure.,... yall n*gga betta read.....

and that guy that said something like this has pros and cons....

everything has pros and cons
 13 years ago '04        #8
Sk9 2 heat pts
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 deadman said:
not really... it says she can't feel pain..... she can feel pleasure.,... yall n*gga betta read.....

and that guy that said something like this has pros and cons....

everything has pros and cons
I think he was tryin' to play off tha "Pain is Pleasure" saying...
 11-02-2004, 09:42 AM         #9
u_dont_know_me 
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i feel sorry 4 the kid, that sh*t is far from funny
 11-03-2004, 08:10 AM         #10
OoShook1oO 
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i feel sorry for the child
 11-03-2004, 11:14 AM         #11
TornadoWarning 
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 slimyellow said:
damn so i may be wrong but if i had her disease... i could walk outside nekkid in the snow and not feel sh*t???


thassssss wild


CORRECTOMUNDO
 13 years ago '04        #12
JayR04 111 heat pts111
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she can have kids with a breeze and be on her period just bleedin all day and no pain. thats kinda tight. i wish my girl had that.
 13 years ago '04        #13
T.R.U. 
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 OoShook1oO said:
i feel sorry for the child
I do too., Thats a shame. God bless her.
 11-04-2004, 09:51 PM         #14
SLR_TaLiBaN 
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 JayR04 said:
she can have kids with a breeze and be on her period just bleedin all day and no pain. thats kinda tight. i wish my girl had that.

ill co-sign to that one homie..
 11-04-2004, 10:30 PM         #15
master_mind_jg 
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 slimyellow said:
damn so i may be wrong but if i had her disease... i could walk outside nekkid in the snow and not feel sh*t???


thassssss wild

lol yea its cool to not feel sh*t, and unfortunately ur not feelin the frost bite on ur feet as well as the hypothermia starting to kick in :-)
 11-05-2004, 01:06 AM         #16
mr'mpc 
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that's some X-Men sh*t....no joke.
 11-05-2004, 01:24 AM         #17
NuT 
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yooo i played sandlot ball with one dude that had the same sh*t, he staright played wit no shoes on, runnin on sticks n sh*t like it was nothing
 11-05-2004, 02:04 AM         #18
D0nniedarK0 
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WOULDNT BE A BAD IDEA..BUT IT WOULD BE..BC IF SHE KEPT ON AT something she didint know wha it was doin..she could be in trouble..IE..playing with fiyah
 13 years ago '04        #19
jazzypoet 
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you can go outside in the cold and all that but your body still will be affected for real so you going to get frost bite and all that just you wn't know it and not know you hurt this could be dangerous.
 11-05-2004, 07:32 AM         #20
keyoteh 
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I heard a story of a dude that got hit by lightning and had the same sh*t happen. He broke his arm one time and couldn't feel it. Danglin' limbs n' sh*t.
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