why pain doesnt suck (at least not when youre still a baby) - Tilted Forum Project Discussion Community

AfterBurn · 02-28-2004, 10:53 PM

http://www.kare11.com/news/news-arti...?NEWS_ID=60120

Quote:

Gabby Gingras has a disease so rare she's the only person her parents and doctors can find in the U.S. suffering from it. Like any other three-year-old, Gabby takes her share of slips and falls. Her reaction to each is predictable — at least for her family. For no matter how hard Gabby hits the ground, she will not shed a single tear. Hard as it is to fathom Gabby Gingras feels no pain. There is no cure, nor will she outgrow it. "She fell down the stairs the other day in the garage," her dad says. "She just picked herself up and started climbing up the stairs again like nothing had happened." "She never cried," her mother adds. Gabby was born with a genetic defect called "Hereditary Sensory and Autonomic Neuropathy Type-5. It is so rare her doctors don't know of another person with it in this country. Research done for her parents turned up a dozen known cases in the world. "A dozen in the world," Trish Gingras says. "There are no support groups, there are no Web sites, there are not parents who can tell us what we might expect. Nothing." It was the last thing Trish and Steve Gingras expected when Gabby became a little sister to their daughter Katie three years ago. "Oh, she was the sweetest little baby," Trish says. But something didn't seem right when their little baby kept scratching her face. Things got worse when Gabby started teething. "She (was) severely gnawing on her hands, when the teeth come through even a little bit — biting, biting, biting, so they looked like raw hamburger," Trish says. They were the first puzzling symptoms of Gabby's disorder later diagnosed by neurologist Steven Smith of Gillette Children's Specialty Healthcare. "Little tiny nerve fibers, the smallest of the nerve fibers, that are supposed to record pain, send that signal to the brain, so you can interpret what it is. Those fibers are not working," Smith says. So often we think of pain in a negative way. But it is pain, that protects us. Because Gabby feels no pain, she no longer has any teeth. "Didn't hurt her at all getting a tooth ripped out," Steve Gingras says. The teeth she didn't break off while biting toys were removed by an oral surgeon after Gabby chewed up her mouth and tongue so badly she had to be hospitalized. "Pain is the protective mechanism, and she doesn't have that," Dr. Smith says. Gabby didn't have pain to save her eyes either. She scratched them so severely, that at one point doctors sewed them shut to keep her fingers out. But, the damage was already done. Last week Gabby's family was at Fairview University Medical Center to discuss the removal of her left eye, now swollen and blind from glaucoma brought on by the scratching. The vision in Gabby's scratched right eye, her good eye, has been measured at 20-300. "There are days where you look at (baby) pictures and you see those bright eyes ... and you wish you knew then what you know now. We wish we'd have thought of the idea a little bit sooner for the goggles," Trish says. The swim goggles she wears around the clock were her dad's idea. They provide a layer of protection that is quite possibly the only reason Gabby can see her beloved princesses — her dolls and the characters in movies — at all anymore. "She is awesome about wearing them. They're just part of her," Trish says. The goggles are part of Gabby's wardrobe wherever she goes, including pre-school in Monticello where Gabby has been assigned a paraprofessional who makes sure she doesn't get hurt. Caution seems justified. Gabby broke her jaw a year ago and no one knew it for more than a month. Last fall, she snuck out of bed, stood in front of a hot steam humidifier and suffered second-degree burns. "She never felt the pain of the burn," Trish says. But if Gabby was cursed by genetics, she was blessed with some wonderful tools for coping. Witness a conversation between Gabby and her mom when the child is caught on the family couch with a beverage." "I'll have to take your milk, because we're not supposed to have chocolate milk in the living room right?" "Too late now," Gabby teases. "She's got attitude and I think that will serve her well," Trish says. "She needs a little bit of attitude," Gabby's attitude and spirit win over everyone she meets. Earlier this month she was crowned Princess for a Day at a royalty brunch in Becker. Gabby's parents have no idea what's ahead for their daughter — but they are determined the girl who can't feel pain will know what it feels like to be happy.

I'd want this disease later though

aarchaon · 02-28-2004, 11:01 PM

seriosly though what the fuck

i mean,how now brown beuracrat

oh shit

bermuDa · 02-28-2004, 11:13 PM

I used to fall down and get back up without a word when I was a kid, but I just have a high pain threshhold... scratching myself blind would really suck!

In a way, this sounds like a genetic form of leprosy, which also attacks the nervous system. I'm sure she'll make a very interesting character when she grows up.

bernadette · 02-28-2004, 11:37 PM

holy shit. that is so bizarre.

reading that whole block of white text on blue was painful to me. wonder if that would hurt gabby?

seriously though... that would suck to be her parents. how helpless you'd feel to witness your daughter unwittingly mutilating & injuring herself.

World's King · 02-29-2004, 02:32 AM

That would suck.

With as much pleasure as I get outta pain... damn... my sex life would be ruined.

CinnamonGirl · 02-29-2004, 04:46 AM

I remember sitting in 8th grade science class, and our teacher asked if we had the option, would we not want to feel pain? Pretty much everyone in the class thought that would be the coolest thing ever, until he pointed out how badly we could hurt ourselves without even knowing about it.

Poor kid...

flamingdog · 02-29-2004, 06:29 AM

Like, the evidence is right there in the story. The kid has scratched itself blind in one eye already!

-Ever- · 02-29-2004, 12:01 PM

Crazy. Download the video from the website. Very interesting.

Averett · 02-29-2004, 12:51 PM

Poor little kid... That's going to be a rough life. What if she somehow cuts herself and her parents don't notice right away, she could bleed to death

amonkie · 02-29-2004, 03:28 PM

Part of the reason there's so few people in the world with non working pain receptors is their increased susceptibility to injury, and as a result a shorter life span. Most sufferers end up with severe arthritis because their body does not recieve enough range of motion exercise(not moving at all while sleeping) to keep muscles healthy and workable. I spent almost a month studying this in a class semester, it really is a sad way to live. Thank goodness that poor little girl has an attitude with some spunk in it- she'll need it.

SabrinaFair · 02-29-2004, 04:02 PM

Wow.

Pain is useful physically as well as emotionally. I am fasinated.

legolas · 02-29-2004, 04:09 PM

omg, that is the craziest thing i have ever heard

denim · 02-29-2004, 04:30 PM

I've heard of this before, I think. In a fiction book.

(edit) Riley-Day Syndrome. Heard of it in Callahan's Legacy by Spider Robinson.

('nother edit) They should use a support group for parents of children with pain problems like the above, rather than just those with this particular syndrome.

Bleed Me Dry · 02-29-2004, 08:27 PM

That's has to be really hard on her parents. It's hard enough to predict what a normal 3 year old will do...they're fucking crazy lil' shits. She will have some good coping mechanism's though, I bet she'll be cool as hell.

Holo · 03-01-2004, 08:33 AM

She's gonna hate it if word ever gets out at school. I can see ppl setting her on fire with lighters in HS now, and ppl stabbing her with pencils. I can't see how she could go to a normal school or maybe even school at all.

Xell101 · 03-01-2004, 12:10 PM

I hope she can at least figure out how to detect damage.

02-28-2004, 11:01 PM	#2 (permalink)
aarchaon Insane	seriosly though what the fuck i mean,how now brown beuracrat oh shit __________________ Green. Yellow. Blue. Last edited by aarchaon; 02-28-2004 at 11:06 PM..

02-28-2004, 11:13 PM	#3 (permalink)
bermuDa don't ignore this--> Location: CA	I used to fall down and get back up without a word when I was a kid, but I just have a high pain threshhold... scratching myself blind would really suck! In a way, this sounds like a genetic form of leprosy, which also attacks the nervous system. I'm sure she'll make a very interesting character when she grows up. __________________ I am the very model of a moderator gentleman.

02-28-2004, 11:37 PM	#4 (permalink)
bernadette ::::::::::::::::::::::::: :. Location: this ain't kansas, toto	holy shit. that is so bizarre. reading that whole block of white text on blue was painful to me. wonder if that would hurt gabby? seriously though... that would suck to be her parents. how helpless you'd feel to witness your daughter unwittingly mutilating & injuring herself. __________________ .:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.:.

02-29-2004, 02:32 AM	#5 (permalink)
World's King Here Location: Denver City Denver	That would suck. With as much pleasure as I get outta pain... damn... my sex life would be ruined. __________________ heavy is the head that wears the crown

02-29-2004, 04:46 AM	#6 (permalink)
CinnamonGirl She's Actual Size Location: Central Republic of Where-in-the-Hell	I remember sitting in 8th grade science class, and our teacher asked if we had the option, would we not want to feel pain? Pretty much everyone in the class thought that would be the coolest thing ever, until he pointed out how badly we could hurt ourselves without even knowing about it. Poor kid... __________________ "...for though she was ordinary, she possessed health, wit, courage, charm, and cheerfulness. But because she was not beautiful, no one ever seemed to notice these other qualities, which is so often the way of the world." "Tell me, what is it you plan to do with your one wild and precious life?"

02-29-2004, 06:29 AM	#7 (permalink)
flamingdog Still fighting it.	Like, the evidence is right there in the story. The kid has scratched itself blind in one eye already!

02-29-2004, 12:01 PM	#8 (permalink)
-Ever- Junkie Location: San Francisco	Crazy. Download the video from the website. Very interesting. __________________ Embracing the goddess energy within yourselves will bring all of you to a new understanding and valuing of life. A vision that inspires you to live and love on planet Earth. Like a priceless jewel buried in dark layers of soil and stone, Earth radiates her brilliant beauty into the caverns of space and time. Perhaps you are aware of those who watch over your home And experience of this place to visit and play with reality. You are becoming aware of yourself as a gamemaster... --Acknowledge your weaknesses--

02-29-2004, 12:51 PM	#9 (permalink)
Averett Is In Love Location: I'm workin' on it	Poor little kid... That's going to be a rough life. What if she somehow cuts herself and her parents don't notice right away, she could bleed to death __________________ Absence is to love what wind is to fire. It extinguishes the small, it enkindles the great.

02-29-2004, 03:28 PM	#10 (permalink)
amonkie Drifting Administrator Location: Windy City	Part of the reason there's so few people in the world with non working pain receptors is their increased susceptibility to injury, and as a result a shorter life span. Most sufferers end up with severe arthritis because their body does not recieve enough range of motion exercise(not moving at all while sleeping) to keep muscles healthy and workable. I spent almost a month studying this in a class semester, it really is a sad way to live. Thank goodness that poor little girl has an attitude with some spunk in it- she'll need it. __________________ Calling from deep in the heart, from where the eyes can't see and the ears can't hear, from where the mountain trails end and only love can go... ~~~ Three Rivers Hare Krishna

02-29-2004, 04:02 PM	#11 (permalink)
SabrinaFair Junkie Location: Louisville, KY	Wow. Pain is useful physically as well as emotionally. I am fasinated. __________________ "With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy." -Desiderata

02-29-2004, 04:09 PM	#12 (permalink)
legolas shit faced cockmaster Location: CT	omg, that is the craziest thing i have ever heard __________________ "To alcohol! The cause of, and solution to, all of life's problems."

02-29-2004, 04:30 PM	#13 (permalink)
denim Banned Location: Massachusetts, USA	I've heard of this before, I think. In a fiction book. (edit) Riley-Day Syndrome. Heard of it in Callahan's Legacy by Spider Robinson. ('nother edit) They should use a support group for parents of children with pain problems like the above, rather than just those with this particular syndrome. Last edited by denim; 02-29-2004 at 04:55 PM..

02-29-2004, 08:27 PM	#14 (permalink)
Bleed Me Dry Insane Location: Hell	That's has to be really hard on her parents. It's hard enough to predict what a normal 3 year old will do...they're fucking crazy lil' shits. She will have some good coping mechanism's though, I bet she'll be cool as hell. __________________ Bite Me... But Only If Invited

03-01-2004, 08:33 AM	#15 (permalink)
Holo A Real American	She's gonna hate it if word ever gets out at school. I can see ppl setting her on fire with lighters in HS now, and ppl stabbing her with pencils. I can't see how she could go to a normal school or maybe even school at all. __________________ I happen to like the words "fuck", "cock", "pussy", "tits", "cunt", "twat", "shit" and even "bitch". As long as I am not using them to describe you, don't go telling me whether or not I can/should use them...that is, if you want me to continue refraining from using them to describe you. ~Prince

03-01-2004, 12:10 PM	#16 (permalink)
Xell101 Junkie	I hope she can at least figure out how to detect damage.