Jun
15
2005

Recently, a five-year-old girl named Gabby Gingras was in the news. Gingras has an interesting predicament: she was born with a disorder that keeps her from feeling any physical sensations like pain. Her disorder is called Hereditary Sensory and Autonomic Neuropathy type-4, or HSAN type-4.

It's a tough life when you can't feel anything. Gingras wandered around for quite a while with a broken jaw once, and no one noticed until she developed a fever due to an infection the broken bone caused. Gingras can't control her body temperature in extreme weather, either. Since her body can't feel pain, she can't feel heat, and her sweat glands don't kick in when she starts to get hot.

She lost an eye due to excessive rubbing and scratching, and now wears a prosthesis—a fake eye. Her baby teeth had to be pulled out because she started to chew apart her tongue and the inside of her mouth. (She didn't stop because it didn't hurt.) Her other eye is pretty bad; she has a prescription of 20/200. Her parents are debating whether or not to put her through eye surgery. If all goes well, she would be able to see much better. If not, she could be totally blind.

Luckily for the rest of us, this hindering trait is extremely rare; only 100 cases have been documented.

--information in this article was found in the Minneapolis Star Tribune on Sunday, May 15th 2005.

Your Comments, Thoughts, Questions, Ideas

Anonymous's picture
Anonymous says:

HI:
i'm researching this condition and wondering if you've found any helpful resources or websites that you wouldn't mind sharing. danke.

posted on Thu, 04/06/2006 - 9:10am
Anonymous's picture
Anonymous says:

Hi:
I'm an artist researching this condition and i'm wondering if you've found any resources or websites that are trustworthy and accurate. danke.
I also wonder if Gabby has other senses affected by the condition: taste, smell, etc?
can she feel when her limbs/ feet fall asleep?

posted on Thu, 04/06/2006 - 9:17am
Anonymous's picture
Anonymous says:

is is sad that anyone would have to go through this...

posted on Mon, 04/24/2006 - 7:08am
Anonymous's picture
Anonymous says:

I live in Tennessee and I think my son has CIPA. He has had several surgeries and he does not complain of pain. Kids make fun of him. he is 11 and will turn 12 in November. I could really use any info or support I can get.

posted on Wed, 05/03/2006 - 10:33pm
Kari Nelson's picture
Kari Nelson says:

Gabbi is very popular in my town, Monticello, where she lives and goes to school. I know a lot about her because my best friend's mom used to work with her at preschool. Her father thought of having her wear goggles all of the time so that she wouldn't hurt her eyes any more. She also purposely falls on ice during the winter for fun, and because she doesn't know that it is bad for her.

posted on Fri, 07/08/2005 - 9:10pm
Anonymous's picture
Anonymous says:

Wow, freaky. It would freak me out to feel no pain in a crash or something.

posted on Thu, 05/04/2006 - 10:53am
Liza's picture
Liza says:

There is a post in this thread that lists the clinical symptoms of Gabby's disease, and links to related conditions. Remember, though, that a checklist of symptoms on the Internet is no substitute for a doctor's opinion.

There's also a post in this thread from Gabby's dad. He runs a foundation to educate people about HSAN and support those who have it. He lists his contact information--get in touch with those folks.

And definitely, definitely take your son to the pediatrician and express your concerns.

posted on Thu, 05/04/2006 - 8:36am
Matt's picture
Matt says:

I want to know more about this disease.

posted on Thu, 12/15/2005 - 7:18pm
Lalonnie's picture
Lalonnie says:

I would like to find out more about this disease Hereditary Sensory and Autonomic Neuropathy-4 and Congenital Insensitivity to Pain (CIPA). Are they the same thing?

posted on Fri, 03/10/2006 - 3:49pm
Anonymous's picture
Anonymous says:

You need to do extensive research and find a Doctor who can help you with the as soon as possible. Mortality is very high, life expectancy is low. You need to refocus your son's education on survival first. I have a nephew with this disorder and he is not facing up to it. Good luck.

posted on Sun, 12/24/2006 - 8:49am
J. Scott's picture
J. Scott says:

How can you say that this is "freaky"? Are you as insensitive as you sound? That little girl was beautiful! She was happy and lively, full of life and wonder. I had a son who was like that, sadly he passed away in 2004 at the age of six. His smile brought out the sunshine, as that little girls smile does for her parents.

posted on Fri, 01/05/2007 - 2:13pm
Liza's picture
Liza says:

I'm so sorry for your loss.

It was insensitive, but I don't think the poster meant that Gabby is freaky. I'm sure he/she meant that it's incredibly hard--"freaky," even--to imagine a life without pain.

But it's important to remember that we aren't talking about these things in the abstract. Gabby is a real little girl, with thoughts and feelings, and she's alive and well. And maybe reading this page! Thanks for reminding us.

posted on Fri, 01/05/2007 - 4:04pm
Anonymous's picture
Anonymous says:

man this is creepy. id hate to not feel pain and not know that i was bleeding severly!!!

posted on Thu, 03/01/2007 - 1:24pm
kelcie's picture
kelcie says:

This girl lives in my town...ive seen her before shes adorable

posted on Tue, 08/21/2007 - 10:51am
Anonymous's picture
Anonymous says:

This condition sounds like something that mainly affects the nerves, and sinc the sensation of a body part "falling asleep" is caused by nerves basically bunching together, her limbs probably don't "fall asleep."

posted on Mon, 06/20/2011 - 9:39am
Anonymous's picture
Anonymous says:

Each person is different, when she hits if she's lucky enough, puberty will change everything. There are many levels of this condition it is not fun, nor amusing. I feel for this child, I hope she is one of the few lucky who make it to there twenties.

posted on Fri, 09/09/2011 - 9:31pm
SerenaNJ's picture
SerenaNJ says:

I know, I think I know someone with CIPA! She doesn't feel any pain but she doesn't go through a lot of fevers because she's always in a cold house

posted on Tue, 02/21/2012 - 9:24pm
deanne wigglesworth's picture
deanne wigglesworth says:

I just read your story and I am in shock... Is there anything that I can do to help her or anyone else that may have this problem? I live very far away but would like to know more about gabby, I have a four year old son and am in the health care field. I would understand if you can't reply because your so busy. thank you deanne

posted on Wed, 11/09/2005 - 3:31pm
Liza's picture
Liza says:

Gabby appeared on the Oprah show on Tuesday, 11/8. She's also the subject of a documentary: filmmaker Melody Gilbert created "A Life Without Pain" to tell the stories of Gabby and two other children with the same disorder. (Fewer than 100 people in the world have Gabby's disease.)

Gabby's parents also founded a charity, A Gift of Pain, Inc., that provides support for families of children with HSAN.

posted on Wed, 11/09/2005 - 4:19pm
Steve Gingras's picture
Steve Gingras says:

I am Gabby's Dad.

Everything that has been written above is true. Gabby doesn't feel any pain and she doesn't sweat. She does have the sense of touch. The name of the condition is Congenital Insensitivity to Pain with Anhydrosis (CIPA). HSAN 4&5 fall under the CIPA umbrella. The condition is extremely rare. There are only about 100 cases world wide.

She has lost an eye due to her scratching her own eyes. She broke her jaw. The doctors said it was broken for about a month. She used to chew on her fingers until they were bloody and chew her tongue like it was bubble gum.

We have started a foundation with the main goal of setting up a support group for all of the families that we can find. The more families we find the more we can learn from each other. We currently have 30 people registered with foundation. If you know of someone with the condition please have them contact us so we can learn from each other.

Today Gabby is in regular kindergarden and doing great.

If you have any questions or would like more information please email us.

Thank you,
Steve Gingras

posted on Mon, 11/28/2005 - 11:58am
CINDY KOSTER's picture
CINDY KOSTER says:

WE LIVE IN STICKNEY, SD A TOWN OF 350 PEOPLE. OUR DAUGHTER AMIE IS GOING TO BE 14 TOMORROW AND SHE HAS HSAN-4. SHE HAS HAD MULTIPLE BREAKS AND HAS TWO DISLOCATED HIPS. SHE USES A WHEELCHAIR MOST OF THE TIME, BUT CAN WALK ON HER HIPS BECAUSE SHE DOESN'T FEEL ANY PAIN BUT TO MUCH WALKING CAN DO MORE DAMAGE TO THE BONES. WE FIRST NOTICED THAT THERE WAS A PROBLEM WHEN SHE WAS STARTING TO TEETH AND WOULD BITE HER HANDS AND FEET TILL THEY BLED. WE PUT SOCKS ON HER HANDS AND SHOES ON HER FEET TO PREVENT HER FROM HURTING HERSLEF. I HAVE TO LEAVE FOR WORK BUT AM INTERESTED IN ANYMORE INFORMATION YOU HAVE. CINDY KOSTER

posted on Mon, 02/11/2008 - 9:05am
Anonymous's picture
Anonymous says:

I am a concerned grandparent that saw the show about this disease. I have a 5 month old grandson. My daughter has told me several times he has not cried and she thinks he has a high tolerance for pain. What are the early signs? Did Gabby chew on her hands and pinch herself? I hope I am just overreacting!

I am sorry for what you have to deal with.

posted on Thu, 12/22/2005 - 6:06am
Liza's picture
Liza says:

This website lists some of the clinical manifestations of Gabby's disease and related neuropathies. Remember, though, that these conditions are really rare; Gabby is one of only 100 people in the world with her condition. And checking a list of symptoms on the internet is no substitute for a pediatrician's opinion, if you're really worried.

posted on Thu, 12/22/2005 - 3:18pm
Anonymous's picture
Anonymous says:

Has she done anything dangerous yet?

posted on Thu, 12/22/2005 - 1:12pm
GABBY'S Dad's picture
GABBY'S Dad says:

I am Gabby's Dad.

If you have some questions you can email us directly at the following email - Giftofpain AT Connections-etc DOT net.

Use the @ sign for AT and . for DOT.

I am doing this to avoid junk email programs that look for email address.

Or call at 763 263-0739

Thanks,
Steve and Tricia Gingras

posted on Tue, 01/03/2006 - 12:53pm
Anonymous's picture
Anonymous says:

I believe my son has this condition. I live in Tennessee. My son is 11 years old and he hasn't been diagnosed yet. He has it no doubt. The doctor told me when he was born that I needed to get him checked in the future. I didn't waant to put him through the testing. I guess I need to though. I just don't want him poked and prodded just to prove that he doesn't feel it. I don't think there is any neurologist in my area that even know anything about it.

posted on Wed, 05/03/2006 - 10:39pm
Liza's picture
Liza says:

Gabby's condition is extremely rare, and it seems a little unlikely that, if your son had it, he wouldn't have been diagnosed over the course of 12 years. But there are a variety of similar conditions that also dampen the sensation of pain.

There is a post in this thread that lists the clinical symptoms of Gabby's disease, and links to related conditions.

And there's a post right above yours from Gabby's dad. He runs a foundation to educate people about HSAN and support those who have it. He lists his contact information--get in touch with those folks.

And definitely, definitely take your son to the pediatrician and express your concerns.

posted on Thu, 05/04/2006 - 8:33am
Gabby's Dad's picture
Gabby's Dad says:

If you really think your son has this please contact us.
We have set up a website at Gift-of-pain.org.
We also have a foundation with the goal of helping families live with the condition.

Please contact us.

Good Luck

Steve and Tricia Gingras

posted on Mon, 12/18/2006 - 11:13pm
Kendall's picture
Kendall says:

I recently read that she also used burn her hands and fall down in school and say, "Ouch Ouch" even though it idn't hurt her

posted on Fri, 02/03/2006 - 7:44pm
Lilly's picture
Lilly says:

hi does anyone know if there is a cure for hereditary sensory and autonomic neuropathy type 4 , is there any medical centers

posted on Thu, 06/15/2006 - 4:16pm
Gabbys Dad's picture
Gabbys Dad says:

Yes Gabby says "OUCH." It's a behaivor that she learned from her sister. It lets us know that something has happened and we should check her.

There is no cure for HSAN or CIPA. Our goal is to learn to live with the condition. That is why we are tring to locate and learn as much as we can from people that live with the condition. The more we learn, the more we can share and the more people we can help.

If you think your child has this condition you should get it checked out ASAP. There are several other reasons why someone could have a high tolerence for pain.

Again if you would like to contact us the name of our foundation is A Gift of Pain. Our website is www.Gift-of-Pain.org. The website has forums where you can post questions.

Thanks again to everyone

Steve and Tricia

posted on Fri, 06/16/2006 - 10:11am
Alice's picture
Alice says:

Hi I am interested in this condition as my daughter Alicia was diagnosed with the same condition in 1989. She was born in December 1988 and was continually in and out of hospital from the age of about 6 weeks she was continually agro and under her birth weight we later found out she was lactose intollerant. she was always biting her fingers and tounge and clawing her mouth, she pulled her first teeth out herself just clawing at her mouth and the teeth she didn't pull out she was mutilating her fingers and tounge. Alicia bit of the point of her tounge. When she was 13 months old she broke her femur and we had docs come to visit. although this was distressing at the time they were very understanding of Alicia's condition and were a big help to my family. Alicia was also taking seizures from an early age. She developed an infection in her heal which later spread this was Austiomilitis and later a multiple resistant staff she was continually in and out of hospital for several years and passed away at the age of 7 1/2 due to all the infections that she had and continual antibiotics she couldnt fight anymore and passed in hospital with bilateral pneumonia as well as all the others. The origional documents that were given to us about this condition Hereditary Sensory Neuropathy type 4 was lost by workers and I would like to get some more information about this condition for my records thankyou Alicia's Mum Alice
I would also like to take this opertunity to thank the many Doctors and Nurses and carers who looked after Alicia in her short life you all did an amazing job thankyou Sincerely Alice

posted on Tue, 10/24/2006 - 7:59am
Bre's picture
Bre says:

I watched a television special on this disease, and it is pretty sad, the children constantly had to be checked out, with full on cat scans/urinalysis/ and blood test a couple times a month. They have to be under constant watch too.

posted on Tue, 02/13/2007 - 10:14pm
Anonymous's picture
Anonymous says:

man i feel so bad for the people with CIPA. i knew a child who i beleve had this disease. he lived in india and he used to chew on his tounge untill it would bleed. he would jump from rooftop to roof top because he felt no pain when he landed. he passed away at the age of 7 before the doctors could diagnose him with this disease. i feel for you guys and i hope one day we can find a cure.

posted on Mon, 03/05/2007 - 8:57pm
elizabeth's picture
elizabeth says:

These children who have this disease , I'm not saying its good but it's sort of good they can not feel pain. Its not good that the children mutilate themselves because they can't feel but it could be a good thing in the long run. I am truly sorry for the children that have to endure this pain and suffering even though they can't feel it. It would be very great if the scientists of today could someday find a cure.

My name is Elizabeth and I attend Shepherd Hill Regional High School. I have heard many sad this about children with no pain and in some ways i am jealous. I have had so much pain because of soccor and many years of dance, so in a way it would be nice to not be able to feel pain.

I wish all the children luck and hopefully doctors can help them live normal lives.

posted on Thu, 03/22/2007 - 12:05pm
Anonymous's picture
Anonymous says:

I would like to see more being done to get people aware of this desease. From what i have just read alot of children have this. And this is the first i have heard about it!!!

posted on Thu, 03/22/2007 - 12:28pm
Anonymous's picture
Anonymous says:

it says only about a hundred people have it, out of some billion people, that isn't alot, though i do agree, people should be made more aware.

posted on Thu, 03/22/2007 - 2:32pm
Anonymous's picture
Anonymous says:

that is so sad....

posted on Tue, 03/27/2007 - 1:27pm
Anonymous's picture
Anonymous says:

it's hard having that, I do... but not as bad I can feel some pain but only to a certain extent. If I broke a bone as in like a crack I wouldn't feel it, it would have to be at an extreem measure where I would have had to break it in half or something like that. I'm 13 years old, it's hard. I need to set my watch allarm to tell me when to go to the bathroom. I'm good when it comes to food though, I can feel when I need to eat and when I don't. But it's never easy, if I fall down I have to go get checked out. I'm constantly at the doctors to make sure I never hurt myself too badly. I've lost the use of my top knuckle on my left thumb because when I was younger I broke it and never felt anything. It healed wrong and now I can't use it. Some people wish they couldn't feel pain, it's hard I hate telling people and only 1 person knows at my school. If word gets out people would think it's cool and try to hit me. When ever I get kicked I tend to fake pain just to seem normal. It's hard for me to cry and when ever I do anything I have to check, eyes, mouth, skin, I even sometimes check in between my toes for sweat. I'm not aloud to play any sports even though I want to. When I was little I accidently put my hand on the stove, It felt warm to me but definatly not hot. I ended up in the Hospital with 3rd degree burns, blisters and whats now scars. I also have a disease that doctors call concous sleep disorder. I can't dream and basically my nerves never go to sleep. I smell, hear, feel everything in the night, if a spider crawls up my leg I'm instantly awake. Even though I have all of these problems I wouldn't say I'm unhappy though. I have friends and family that love me and I'm happy with my life. It's difficult but at least I won't ever be the same as anyone else :]

posted on Thu, 05/17/2007 - 5:35pm
Leann's picture
Leann says:

I can't believe this is true thats crazy I wish I can meet her but I feel bad she is young n I think that will hurt if I bit my fingers..!!! =( owww.. but anyways good luck wit everthing (PEACE)!! bye =)

posted on Mon, 06/04/2007 - 1:44pm
Anonymous's picture
Anonymous says:

What is the diesese called?

posted on Wed, 06/06/2007 - 7:22pm
bryan kennedy's picture

It is called "Congenital Insensitivity to Pain."

posted on Thu, 06/07/2007 - 6:49am
Steve Gingras (Gabby's Dad)'s picture
Steve Gingras (Gabby's Dad) says:

I have read all the comments on this thread and I would like to thank all you for your wishes and thoughts.

We have started a foundation with the goal of finding and connecting as many people and families as possible. So far we have 39 people from Paris France to New Zealand. Our main goal is to learn from each other the best way to live with the condition. We are our own support group.

The name of the foundation is A Gift of Pain. We have a website at www.gift-of-pain.org
I am sorry it needs to be updated.

If you have any questions my email and home phone are posted else where in this thread.

Mr j. Scott (posted in jan 07) I would really like to talk to you.
I hope you will share your story so we can learn from it.
Your story could save my daughters life!

Thanks

Steve and Tricia Gingras

posted on Fri, 08/03/2007 - 2:44pm
Anonymous's picture
Anonymous says:

that's....horrendous

posted on Sat, 08/11/2007 - 11:43pm
Anonymous's picture
Anonymous says:

I hope they find a cure for that.

posted on Tue, 08/21/2007 - 12:00pm
Loki's picture
Loki says:

I'm not sure if it's a blessing or a curse. I wouldn't like it but some people might. I'm sorry to all the kids who have this disease because it is so sad that only they have to put up with this.

Sincerely,
From a person who cares

posted on Tue, 08/21/2007 - 12:04pm
mathgeek101's picture
mathgeek101 says:

That is sad! I couldnt imagine being in that situation.But i hope and pray that little girl will be okay!

posted on Tue, 08/21/2007 - 1:44pm
stickman's picture
stickman says:

i am writing a school report on this and i need to know "can she feel the wind on her cheek?" etc

posted on Thu, 11/01/2007 - 3:36pm
KatRog's picture
KatRog says:

I met Gabby today. She is great. Full of life, This is a heart breaking illness and her big sister is so great about all the restrictions put upon the whole family. Gabby's family will keep her safe and I am sure she will grow up to be a fine adult with a family of her own. God bless them all.

posted on Thu, 06/19/2008 - 10:23am
Anonymous's picture
Anonymous says:

Hi my name is lauren i am 14 and i am researching this for a project and i would really like if you could give me some more details on how she gets threw her life without feeling no pain if you can please email me at [email protected]

posted on Fri, 06/20/2008 - 7:52am
charlotte oliver's picture
charlotte oliver says:

My daughter Hannah was diagnosed with HSAN TYPE 4 at the age of 15 months, she is now 14 years old. I had all of her teeth removed after she had bitten off the ends of her fingers, her right thumb and half of her tongue. She has suffered repeated fractures, ostyomylitis, septacemia, charcot joints and has recently broken both of her hips which cannot be repaired. She has the most amazing character and strength and is a true inspiration. I have never been in contact with any other parents who have a child with this condition and so have always felt very alone. Would be great to hear from others.

posted on Sun, 06/29/2008 - 4:27pm
Lucy Vine's picture
Lucy Vine says:

Hi Charlotte,

I hope you don't mind me contacting you like this, I'm a writer for a teen mag called Sugar. We read your truly sad, inspiring story in She, and then in The Daily Express and wondered whether you and Hannah might talk to us?

We think you've both been incredibly brave and it's a really moving tale, as well as being a truly important subject and a condition that not enough people know anything about or understand.

If you could get in touch, we'd be so grateful. My email is [email protected]

Thanks, and our very best wishes to you and beautiful Hannah.
Lucy Vine

posted on Tue, 07/08/2008 - 3:56am
Xphile_mo's picture
Xphile_mo says:

Hi Charlotte,

If you read this (again, I realise it was posted a long time ago) I am also searching for others with children who suffer from pain insensivity, and the horrors it brings. Nobody else - no matter how well intentioned - can quite understand what we go through on a daily basis. I have been trying to find a way to contact you for a few days now, since someone I know gave me a copy of the article you and your daughter were mentioned in.
I would love for you (and anyone else in a similar boat) to get in touch with me.
Are you on the Contact A Family website? It's not updated very often either unfortunately, but could contact you without you having to put your e-mail address here.
Hope you read this and get in touch,
Moira

posted on Wed, 12/03/2008 - 5:49pm
a chubby maggot's picture
a chubby maggot says:

wow sad!!!

posted on Tue, 07/08/2008 - 1:31pm
thtblondechick's picture
thtblondechick says:

I cant even fatham how the parents feel about all of this.
i know if my child was like this i would go crazy...i cant even take listening to my niece have a deep cough because i think she is choking.
Good Luck

posted on Sat, 07/12/2008 - 10:52am
momof2's picture
momof2 says:

Does anyone of more than one child with CIPA(HSAN4)?
I read there are 100 in the world, how many do we have in the US?
I have a 10 year old and a 14 year old. We have had so many problems there is to many to count.

posted on Sat, 08/23/2008 - 10:03pm
Liza's picture
Liza says:

momof2, Steve and Tricia Gingras would like to talk to you. They're Gabby's parents, and they run a foundation called Gift of Pain that aims to help children with HSAN4.

They sent me this E-mail:

"We are the parents of Gabby Gingras the little Minnesota girl who doesn’t feel any pain. A posting on 8/23/08 from MOMOF2 is from a mother who is looking for help. She has two children with same condition. We would like to HELP.

We have a foundation to help families like hers and would like to contact her.
Could you please forward this email to her?

Feel free to contact us if you have any questions."

Unfortunately, you didn't create a Buzz account, so I don't have contact information for you. But I do have contact information for the Gingras family. So contact me, or post back here, or go directly to the Gift of Pain website, and you'll be put in touch with a community of people who can help.

Best of luck.

posted on Thu, 09/11/2008 - 9:37am
Moira McLean's picture
Moira McLean says:

My daughter Alyssa is 21 months old and - so far - has bitten the end of her tongue off, bitten a finger almost down to the bone, chewed the side of her tongue off (not long after it had healed from the first reconstruction), bitten straight through her bottom lip and torn several areas of her skin right off. She feels itch although she does not feel "physical" pain, so it seems she does not know when to stop with the scratching and will continue until there are gaping wounds on her.
She is currently being assessed for "channelopathy-associated pain insensitivity" or HSAN V. She is extremely unusual because (unfortunately) she *does* feel gut cramping, and sadly this is to the extreme and a lot of the time but she feels no other pain.
The neurologists currently believe she has a mutation of a disorder called "paroxysmal extreme pain disorder" where the sufferers normally feel extreme pain, but those with the mutation actually feel none instead. She is capable of sweating - and actually does excessively, especially when her guts are crampy - but she still overheats very easily.
I have tried a few times to register on the Gift Of Pain website but so far have had no reply for authorisation, therefore am unable to post anything on there.
I actually found this because someone gave me the article from SHE magazine about Hannah Oliver, and I was actually trying to see if there was a way to contact Charlotte and found this blog. I do have e-mail contact already with Kayla's mum Kim, and it has been invaluable already although understandably she is very busy.
Any help/info etc would be greatly appreciated. Thanks
Moira

posted on Tue, 12/02/2008 - 9:19am
Anonymous's picture
Anonymous says:

Moira,

My grandson seems to be the same. Even though it appears he feels no pain, when infection sets in, or when a bone has been broken for a while he gets listless. Sometimes when he hits his head he'll touch it for just a second. This confuses us because we've been operating under the assumption he feels NO pain.
I think he is going to have to have his teeth removed very soon as he is doing such extreme damage to his tongue, lips, sides of his mouth, and fingers. He was born in 2009 so he is close to the same age as your daughter.

posted on Mon, 06/14/2010 - 8:10pm
Neil's picture
Neil says:

I do believe this disease is more common, in one degree or another, than we are told. I am 54 years old, I used to pick up hot plates out of the oven, only to find blisters later, teeth pulled and filled without sedation or numbing. Broken bones fixed and manipulated without analgesia, never felt any pain. I never felt the cold or the heat.
However I do believe that the condition reverses itself in later years. I now feel the cold, heat and am beginning to have headaches for the first time in my life. The only medications taken in 54 years was amoxicillin.
Wish there was more research for these children. Mind you it's not bad going thru life without pain. But it sounds like some of these kids could harm themselves.
Hope not!
Neil

posted on Thu, 12/18/2008 - 9:10pm
Anonymous's picture
Anonymous says:

dude im watching Extreme Makeover: Home Edition and the little girl has the same thing, she metioned Gabby and i looked her up.

posted on Thu, 01/08/2009 - 7:11pm
Anonymous's picture
Anonymous says:

I was recently looking for that episode. Does anyone know which season and episode it was? Or what the family name is? Thanks!

And good luck to anybody who has this disease. And ecspecially to the parents who have to worry about their child 24/7. I have Type 1 diabetes and I know how much my parents' worried about me when I was younger.

posted on Sat, 02/05/2011 - 10:17pm
anonomys's picture
anonomys says:

I have head a lot about little Gabby. I majorly admire her parents.I was just wondering if anyone had any resources where they can give you an email to contact the parentsI live in Elk River and her mom has come in and talked at our school. If anyone has any thing that I can reach them by, that'd be great! I would love to meet and play with little Gabby. I'm 14 so I wont be some freaky old man.Thanks!

posted on Sun, 04/05/2009 - 11:44am
Georgia's picture
Georgia says:

My son has HSAN. He was diagnosed when he was about 2 1/2. All this time I thought we were alone. I would love to contact Steve Gingras or anyone else with a child of this disorder.

When my son was diagonsed I was told he had a life expectancy of 12 years. He is now 13! The schools have been very kind in altering things that he needs although I have had a couple of teachers that wanted to be a pain and I have to go in and educate them.

My son doesn't have the extreme side of not being able to feel pain but we do know that he isn't "as sensitive" in some parts of his body but overly sensitive in others. No tears, no sweating, chronic constipation, fevers for no reason, no drooling, dimished senses of taste and smell, diminished ability to feel hot and cold.

Would love someone to talk to.

posted on Thu, 06/04/2009 - 8:25am
Anonymous's picture
Anonymous says:

this rare condition do nt reduce life expectancy. whoever told u abt his life exp as 12c is an ass. he just needs to be protected. check temp, cornea, skin fr bruises daily. if fever then, do xray immediately as fracture is the prime cause. some body parts hv more sensory nerve endings than others... so ders diff in sensation.
he needs to b taken care of...

posted on Mon, 01/18/2010 - 2:42pm
Steve Gingras's picture
Steve Gingras says:

We have a support group for families that are affected by kids that don't feel pain. We have over 70 families in our group from around the world. We want to help. Please feel free to contact us.

Steve and Tricia Gingras

Home 763 263-0739
Email [email protected]

posted on Mon, 02/27/2012 - 12:38pm
Steve & Tricia Gingras's picture
Steve & Tricia Gingras says:

We are the parents of Gabby Gingras and we set up the foundation A Gift of Pain. Our main goal is to help all families and people affected by insensitivity to pain by share information and being our own support group.

It is our goal to find as many families as possible to share ideas, experiences, what works and what doesn't.

We also have a Facebook Group set up. It is a closed group for privacy reasons.

If you know of a family that would like to talk to us please tell them to contact us at [email protected].

posted on Tue, 12/15/2009 - 10:14pm
Dennis's picture
Dennis says:

Hello,
It seems that this has not been updated in quite a while, and the gift-of-pain.org website appears to be down. I dont want to try and email Mr. Gingras without knowing if it is okay to do so.
My daughter is 17 months old (ironically enough Mr. Gingras' last post on 12/15/09 was made almost exactly two hours after my daughter was born), has a condition called Septo-Optic-Dysplasia, and it appears that she is unable to sweat and could possibly be unable to feel pain. She has the majority of her teeth already and hasnt ever bitten through her tongue/cheek, but she never reacts to needle pricks, cuts, bruises, etc. The only time she cries is from feeling pressure (i.e. having her arm held down to have blood drawn).
I am hoping to find out more information about CIPA, whether my daughter ultimately is diagnosed with this condition or not. We will be contacting our team of doctors (she already sees occupational therapists, endocrinologists, geneticists, etc. for her SOD diagnosis) to find out what their opinions are.
Thanks and God bless
-Dennis

posted on Sat, 05/07/2011 - 6:41pm
Steve Gingras's picture
Steve Gingras says:

Dennis,
We have a online support group set up with over 70 families from around the world. The group is made up of a great group of parents who have been through what your dealing with. This condition is so rare that nobody can really understand it or how to deal with it. Our group shares ideas or what works and what doesn't. We all want to help. I can also get you some videos to help educate yourself and others.

Please feel to contact us at the numbers below.

Steve and Tricia Gingras

Home phone 763 263-0739
Home email [email protected]

posted on Mon, 02/27/2012 - 12:13pm
Hannah's picture
Hannah says:

I am very concerned... Long story my son doesn't feel pain and he is 8 months old we are trying to do anything him he doesn't say mama dada nothing... the other month he fell on a toy and ripped part of his nose off didn't cry nothing... and then the other day my daughter hit him in the head with a toy wooden hammer a couple times and i jumped up as quick as i could but he had a huge lump and bruise and he was just laughing... he is not even 25 inches long and weights only 15 lbs... my doctor says that most people just have diff pain tolerances but we have been dealing with a temp of 103-105 for the last week and no one is doing anything i need help and i am getting pretty desperate... I don't know what to do... He hurts himself all the time he is all bruised up but i am just scared that they just keep on passing it off as me being overreacting but i am scared to death because well... he cant feel anything and he doesn't act right nor does he grow right he is still in nb clothes and no one is doing anything... some one plz help me

posted on Mon, 06/13/2011 - 4:37pm
Steve Gingras's picture
Steve Gingras says:

Hannah,
We have a support group for families of kids that don't feel pain. We have over 70 families from around the world. Please feel free to email or call us.

Good Luck,

Steve and Tricia Gingras

home 763 263-0739
home [email protected]

posted on Mon, 02/27/2012 - 12:09pm
CL's picture
CL says:

It's reading about things like this that I realized that pain is more a blessing than a curse, and how much we take for granted. I just pinched myself and the sensation I got was amazing- just the fact that I could feel it. All the best to kids and families who have to deal with this.

posted on Fri, 06/17/2011 - 6:10am
Sherri's picture
Sherri says:

Hi I have a 10 year old son who was born with a congenital heart defect called hypo-plastic left heart syndrome. He has has multiple open-hear surgeries and cardiac catherizations. He also has at least 10 other diagnoses including ADD, ODD, Processing delay disorder, and several others. He is also on the Autistic Spectrum. He use to have a really bad temper and slam him head against walls, hit his hands on walls until they were black and blue, he would slap himself across the face, and do several other things. Just yesterday he came home from a friend's and told me he got stung by bees 4 times he wasxn't even upset. When I checked him out I found that he was stung at least 10-12 times. Even when he was smaller he used to fall and get cuts and scraps and not cry. I know he can cry, but I'm not sure he feels the pain. Do you think his surgeries had something to do with this? He even likes to get blood work done, he begs the doctor for it. Can you please let me know what you think about this?

Thanks

posted on Sat, 08/13/2011 - 2:32pm
SerenaNJ's picture
SerenaNJ says:

I think he has CIPA, get him checked out! I wonder what it would be like to have CIPA. Probably bad and good

posted on Tue, 02/21/2012 - 9:55pm
Steve Gingras's picture
Steve Gingras says:

If you think your son or daughter doesn't feel pain please contact us. We now have an internet discussion group with over 70 families from around the world. We know what your going through. Contact us we have been through what you are going through and want to help your family.

Steve and Tricia Gingras

home phone 763 763-0739
home email [email protected].

posted on Mon, 02/27/2012 - 12:04pm

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