She Feels No Pain
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.
Email
Delicious
Digg
Facebook
Google
YahooYour Comments, Thoughts, Questions, Ideas
Wow, freaky. It would freak me out to feel no pain in a crash or something.
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.
is is sad that anyone would have to go through this...
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?
HI:
i'm researching this condition and wondering if you've found any helpful resources or websites that you wouldn't mind sharing. danke.
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.
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.
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?
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.
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.
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.
man this is creepy. id hate to not feel pain and not know that i was bleeding severly!!!
This girl lives in my town...ive seen her before shes adorable
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
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.
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
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
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.
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.
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
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.
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.
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
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
hi does anyone know if there is a cure for hereditary sensory and autonomic neuropathy type 4 , is there any medical centers
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
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
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.
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.
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.
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!!!
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.
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 :]
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 =)
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
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
That is sad! I couldnt imagine being in that situation.But i hope and pray that little girl will be okay!
i am writing a school report on this and i need to know "can she feel the wind on her cheek?" etc
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.
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 charmelotaylor@yahoo.com
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.
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 lucy@sugarscape.com
Thanks, and our very best wishes to you and beautiful Hannah.
Lucy Vine
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
Science Buzz and all related activities
Add a new comment