Congenital Insensitivity to Pain with Anhidrosis

SerendipUpdate's picture

Biology 202, Spring 2005
First Web Papers
On Serendip

Congenital Insensitivity to Pain with Anhidrosis

Sarah Sniezek

Congenital Insensitivity to Pain with Anhidrosis (CIPA) is a rare disease which causes one to lose their feeling of pain. I read this article a couple of weeks ago about a girl who has this rare disease and is incapable of feeling pain and will never know what pain is. It intrigued me and sparked my web paper topic. I wanted to know everything there is to know about this disease and my research to give me answers, but, of course, this was not the case. The more and more I researched I began to wonder if this supports our notion of the "Brain =Behavior". There is so much more to learn about this fairly young disease and with that please take into account that these are sources off the internet and one could not know if they are fully accurate or not. As for the deep detail of the topic, such as names of different genes and etc, I do not fully understand their full meaning so I will write about what I took from all the different information about CIPA.

CIPA is a disease that is very new and that very few people have. There are only thirty-five US Citizens that have CIPA, and most people with this disease usually do not live past 25, which makes it very difficult to study and to come closer to "getting it less wrong". ((1)) This one particular girl, Ashlyn Blocker, has CIPA which causes her life to be very difficult. Since the young girl was born with CPI, she would have no idea what pain feels like and cannot relate to most people. Most of us, from the day we are born, have this intuitive notion about pain. We feel it and know to be aware of it from learning from our experiences. Imagine being unable to learn what pain is because you are unable to have similar experiences. Well, that is how this young girl was born.
Most people would think it would be great to live without pain, but pain is an indication to our brain that our body needs something. Ashlyn is incapable of living a normal life and has to be examined regularly because there is no way to know if she is endanger of killing herself through high fevers because of the inability to sweat, unknown injuries, and etc. ((4))
Ashlyn's case is rare within the world, but there are other studies of people from different ethnic background which also get CIPA. Through these few studies there has been extensive research done and there are many correlations found. So far, CIPA is defined as an autosomal-recessive disorder ((2)) which is a developmental defect (not necessarily hereditary) ((3)) that usually is caused by a history of some kind of trauma. The person affected by this is unable to feel pain, even though they seem to show a normal central and peripheral nervous system. ((3))

With is young disease there are many questions and hypotheses brought up. There are many correlations and observations. On one study of CIPA, many different people having CIPA were observed and Clinical features, Pathological findings, and Molecular Genetics were all taken into account. Under the Clinical features one finding showed that in CIPA patients there is an overproduction of brain endorphins which could be some how interrelated to this disorder. ((3))

Another study was done by taking a biopsy of the cutaneous branch of the radial nerve of two patients with CIPA, differing in gender and age. Within the older of the two patient's biopsy of the radial nerve, there showed to be no small myelinated and unmyelinated fibers but within the younger of the patient the biopsy showed that they were lacking unmyelinated fibers and that the amount of small myelinated fibers was decreased. This suggests "that the disorder was not a hereditary sensory neuropathy, but rather a developmental defect" ((3)). Another pathological finding was that patients with a very small amount of nerve fibers were more likely to have rare nerve fibers in the dermis and no nerve branches or endings on the epidermis. These patients are classified as HSAN4 patients. The studied concluded that these patients "have a hereditary developmental defect of nerve outgrowth"((3)).
Lastly, the study of Molecular Genetics within CIPA patients gives the most substantial information. The study of a gene tyrosine kinase (NTRK1) which is related to the nerve growth factor (NGF) within the patients having CIPA seemed to be the mutation causing CIPA. This study also suggests that there are other TRK and neurotrophin genes might be the cause of developmental defects of the nervous system. ((3))

As for these studies, they just bring me closer to understanding what I want to understand between the brain and its behaviors. So far within this semester I have been trying to find something to show me that the brain and behavior are not equal, but I still cannot find anything. This rare disease, CIPA, shows that the brain and behavior are equal. People affected by this disease feel no pain and will never understand what pain is. Their behavior is equivalent with their brain state.

I find it interesting though that these people affected by CIPA act the function normally other than them not being able to feel pain and sweat. I wonder is there also something different within their brain. One study did show that there was an increase of endorphins within patients' brains that have CIPA, what does that show? Does it change anything? Why is their behavior still the same as most people other than the feeling of no pain? Is the only difference within their brain their insensitivity to pain?

I went into this research wondering about this disease and if it actually went against "brain=behavior" and it has not so far. It only makes the argument less wrong. This disease affects ones nerves because of a mutation of some sort, most likely a gene mutation within the NTRK1. The behavior still reflects ones brain state.

References


1)American girl feels no pain and smiles to her own Blood

2)Congenital Insensitivity to Pain with Anhidrosis

3)Insensitivity to Pain, Congenital, with Anhidrosis; CIPA

4)Girl with rare disease doesn't know pain

 

 

Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

09/27/2005, from a Reader on the Web

i too am fascinated with this disorder. i am non traditional student, just having returned to college after a long absense. my major is occupational therapy, and i am interested in how this disorder would benefit from OT. one other thing to consider is this. there are many "normal" people with high pain thresholds, and low pain thresholds. is there something in the brain that makes us more or less sensitized to pain?

 

Additional comments made prior to 2007
This was a good article. I am writing a story about a baby with CIPA and her mother. Right now I'm in the middle of research and your article has greatly helped me ... Smileenov, 16 March 2006

 

 

I am a nursing student in Southern California. In researching diseases which effect the sense of touch I came across your site and others talking about CIPA. This is by far the most interesting disorder I have come across. I cannot even begin to imagine the strength of the parents and loved ones involved in caring for these children. These stories and testimonies of those involved truely help me to appreciate my own ability to precieve pain ... Samantha Celaya, 7 September 2006

 

 

I like this topic. It really intrested me once I saw the show "House" and the episode was similar to the story that you gave. At first, I thought that it'll be cool to have CIPA, but then when I realized what can happen to a person when they have that, then it scared me just a little bit. I would like to take upon this assignment to help those who have CIPA because they can't live like that, I mean, it's cool to not feel stuff happening to you, but when it all comes down, a person should still feel what normal people feel ... Tifany, 20 February 2007

 

 

I'm entirely engrossed with the matter of this disorder. Even though I am only 13. I love the television show, HOUSEmd, where it broadcasted a show about a young girl having CIPA. Please feel free to contact me with any information, as I dedicate 90minutes a day towards CIPA research ... Dylan Yamada, 1 March 2007

 

 

I am very intrigued by this disorder as well ever since i saw it on House about 4 weeks ago. I am now able to do a research project on it for my genetics class this semester. Thanks for your information and the links it really helped in this research, I find this very interesting and think its so weird ... Nicki, 14 March 2007

Comments

Cryene 's picture

I have the same condition. I

I have the same condition. I always felt so alone, but seeing this page with the many comments and experiences, it's like I found a family!
I am 16 now, and I have never felt pain, cold nor hot. I was diagnosed at the age 1, and because in my country it is so unknown I was quite isolated and kept in hospital, so doctors could take care of me.
I'm in school now, and I really like to share and teach people about it, since it is so rare. I never spoke with anyone who has this disease, but I would love once.

Cryene

Serendip Visitor sherbear's picture

funny creatures are we!

I am now 33. I have had broken noses and dislocations of my joints (especially wrists) numerous times. Because I didn't recognize the implications of the injury, I set my own bones; of course so I could use them again and they'd look right. I have had root canals and teeth extractions without any need for anaesthetics. I am kind of like human novacaine when it comes to outside skin. I can have stitches without discomfort. I went 11 months with a 0 percent ejection fracture gall bladder before I finally found a surgeon in Ohio that could remove the darn thing.
Life can be tough. People are frequently afraid of what seems different or out of place. Sometimes it is hard for us to fit in or to get help. Hang in there guys! The dysautonomic issues are usually the worst. Have faith. And remember to love.

Serendip Visitor's picture

I have a one year old son

I have a one year old son that fits some of these examples it is very scary for me bc he turned over a dreeser on hisself he cried but only bc he was scared not bc he was hurt as a parent you know which cry is for what. then this past saturday we went to the park and fire ants was covering his legs and feet they really got him and wouldn't u know he didn't even cry.... He also has a hearing loss do to nerve damage so I was just wondering could it be do to the nerve damage.please reply

brittany miller's picture

cant feel pain disorder

i have an 18 month old son who does the same thing he sliced his face open on glass and was bleeding i didnt even know until he came down stairs he never made a sound. and he is always biting through his lips or banging his head to the point of major lumps but it dosent phase him. he has fallen at of a grocery buggy gave him self concutions and he stil dosent cry. i am so lost i dont what to do if you have found any advice please let me know im extermly scared.

Serendip Visitor's picture

CAMP PAINLESS BUT HOPEFUL

If you need somewhere to turn to you can start here there is a network of people in this support group it is a camp for families going through this.

http://www.painlessbuthopeful.org/

David Brayshaw's picture

Is it a moral question?

While listening to a talk given by Ravi Zacharias, the leading Christian apologist, he mentioned a girl who lives near him who has CIPA. He interjected this while expounding on the topic of pain and how it is that people often place moral dimensions in the way they phrase questions concerning pain? For instance, "Why does God allow pain?

In regard to CIPA, the question could be, "Why does God not allow pain?" Either way, the very thing that enslaves and traps us also should draw us into God's arms. But that is not the case for everyone, for almost every atheist or skeptic who writes has named the issue of pain as the main reason for his or her denial of God's existence.

am I part of CIPA's picture

life with out pain...

I am 33 years old and have live without pain, I have a severe back injury to my l4/5 and l5/s1 suffored 5 years ago, I continued to work for 2 years as a heavyduty mechanic until function stopped my body from working not the pain. I take no pain medicine but lose simple body functions of sitting, standing and walking in a very short period of the day. All my doctors ask me to describe my pain and I cannot describe other than loss of function. I broke my bone for my thumb in 2 spots when I was 20 and never went to the hospital for 16 hours following the accident( including a nights sleep) until my coworkers noticed the lost function of the hand and highly recommeded getting it checked, there is numourous times through out my life in which emotion or pain should of prevailed the situation but never showed itself.

my dentist is always in shock as I have cavities to the roots and I dont even know they exist, which cavities have been involved in my entire life from a very young age.

I am now trying to research this condition as now my nephew(6) is starting to show the same signs resilence, but seems to always be plagued by sinus infections without any medical reason.

I f anyone has information pertaining to this could you please link them here in a reply for me to continue learning to topic

Thanks

Serendip sherbear's picture

interested

Pain, my dear friend is a really good indicator that our lives are in imminent danger. In the absence of such an innate warning signal ... we are left at the mercy of others when young and our own strength and ability to adapt as we grow older. Our environment with the vicissitudes of life is strenuous on all sentient beings... subtle differences such as attitudes towards our experiences can make all the difference in the world. I prize my autonomous nature and often find myself embracing my abilities vs disabilities. Where i cannot feel a gentle touch or caress, but am aware that others receive immense comfort and satisfaction from these endeavours... i must settle for my realistic possibilities. Because i empathize and care, i can andhave walked into potentially dangerous situations to save another. I have had to be willing to sacrifice me numerous times throughout the years to ensure safety for people i love. I can take hits and remove fire when it endangers others safety. I have been a lifeguard and a protector. I have often had to be harshly realistic about the consequences of my efforts for i alone am responsible for my choices. My emotional life is strong and affectionate. Because my body lacked the ability to fully grow can nerves i have had to learn to focus intensely and be hyperaware of potential threats to my well being. For me self body checks to see if everything is operating correctly is part of my normal everyday routine. Since my body did not autonomically run properly i acquired the ability externally to assist me in everyday being. Life can be exhausting sometimes...and often it would be far, far easier to escape into the sanctuary of my thoughts. Always remember to include others in your lives cipa can be lonely. Include yourself in others lives positively friends... even if "it hurts". Love is the answer. Sherbear

sherbear's picture

old cipa loves and feels deeply.

I'm 31 years old and have finally had a genetics test to subsidd the insulting and apathetic. Displays that i've received from doctors that i suffer from behavioral problems and am crazy. I waa an international boxer who attended an ivy league school. I taught martial arts and love life. I have a heart thats as big as can be and am empathetic to others plights. I care a.d have been hurt because of it. I assume other people suffer from nonstop life threatening pains and ills when they scream out in bloody murdered. Im sensitive and dont like the idea of others being hurt, i assume something lifethreatening is really wrong and go to others aid. Other than infection, extreme applied pressure and mental anguish towards others inhumane and apathetic responses, i must embarresingly confess that i xont really know pain. This causes confli ting emotio s between me and others. Sometimes i feel like an alien here on native earth. The cipa. hers.

Gregory's picture

DePuy Pinnacle

I wonder how is this disorder different from numbness. Numbness can also make one insensitive to pain. This may be a disadvantage. It would make one susceptible to break and this may lead to DePuy pinnacle implant.

Jeanie's picture

cipa

i am at school and i am really REALLY interested in the subject. i would like if i can hear more about this interesting disease. i am playing a girl with this disease and i need to know every thing that i cam and thank you for every thing!

jeanie

( p.s. this writing has helped me a lot)

Christine Fitzwater's picture

People with too much pain

Perhaps a study should be done with the comparison of CIPA and those with Myofacial Pain Disorder, (causes the brain to send out pain signals all the time) the two results might be able to help those with both disorders. The study of these polar opposites may even further understand CIPA and Myofacial Pain Disorder.

kody evans's picture

i am a dude and i dont feel

i am a dude and i dont feel pain and i laugh at it but i was hit bye three cars and my brother.

Dr.geetha mekoth's picture

prevention in the next baby

Genetic tests in the mother before the next pregnancy

Saurabh's picture

I feel pain but laugh

I feel pain, but I laugh when I feel pain. Is this some kind of disorder.

Elly S's picture

Current Research??

Hi, do you know any teams currently studying CIPA in the US or abroad? Thanks!

Anonymus's picture

Bro & sis doing fine

My brother & sister are both suffering from CIPA and are now 20 & 21 yrs old respectively. Here's my original comment:- http://serendip.brynmawr.edu/exchange/node/1736#comment-106978

I am still waiting to know if there's anyway i can prevent this gene from being passed on to my offspring.

thanks..

Vickee's picture

Misconceptions about HSAN

I am surprised about some of the misconceptions about CIPA. I myself have hsan v, a related and even rarer and lesser known disorder. The difference is that people with hsan v only have mild anhidrosis. And people with hsan can feel some pain, just not nearly as much as normal people. Usually degrees of pain vary by area. I sometimes get headaches but i could not feel anything when i break bones. Its true that its harder to learn to avoid danger. When i was a little kid i would find entertainment in jumping on and down the stairs like a slide and would sometimes cut myself because the blood intrugued me. I also convinced myself that my tooth was wiggly and pulled it out. My parents thought there was something wrong with my brain before they figured out it was my nerves. There are some mistakes in this article. We do know what pain feels like, atleast to some extent. Also it says its not hereditary but its autosmal reccesive which is a contradiction. Feel free to ask me any questions about it. I really want to end some of the myths about this disorder

Aimee M's picture

My son has these symptoms. I

My son has these symptoms. I would like to ask you some questions. If you could email me I would appreciate it

Serendip Visitor's picture

Canine CIPA?

Is it possible for a dog to have it. I foster dogs. I've had over 40. Our last one is a fence climber. She climbed over a chain link type fence and caught her leg as she was going over the other side. She was limping but happily wagging her tail. I thought she just bruised it because she was still climbing it the next day. Finally I took her to the vet and she had a bad break. The vet commented about how she wasn't showing discomfort during the exam, setting, and casting process. He said he had never seen that before. She gets scrapes and cuts all the time. She is only 8 months old and has so many scars. She is not the prettiest dog so nobody has adopted her. So she is now ours forever. We call her Houdini (Dini) because she still is impossible to contain. We are doing our best to keep her safe but we would like to get an answer. Could she have CIPA?

Serendip Visitor's picture

CIPA

Wow, this is totally amazing to read about. This article was brought to my attention by another student because of a discussion in my Anatomy & Physiology class.

June Lumley's picture

CIPA

My great-granddaughter is 18mos old and was diagnosed with this disease a few weeks ago when she was being checked for possible surgery to correct her foot that has 7 toes. they discovered after testing for this and that she has CIPA. My daughter and I are devasted of this news and what we have read about CIPA. Is there any testing or research in the USA? She is currently in foster care as her parents were both addicted to drugs. She was addicted to meth when she was born but she has done so well all things considered...we are so concerned about her future and what if?? anything we can do?

Serendip Visitor's picture

CIPA

i'm diong a report on this adn this jsut raelly helped me adn i also got to read these stories and just oh my gosh. i don't know what to say to this. but i just have to say taht i am grateful to feel the pain. thank you

Serendip Visitor's picture

Im not sure that i really get

Im not sure that i really get the difference between the indifference to pain and the insesitivity to pain. Could someone please explain it to me?
Mike

Serendip Visitor's picture

cipa

is there any treatment or cure for this disease?? have anyone being treated with any kind of medication?was this medication effective?
thank you

christy's picture

cipa

i was born with this and had to have a ton of medical attention due to all the accidents i would find myself in as a child i eventually began to feel some pain when i was five yrs old reading here that seems like i was lucky but also suffer from widespread pain either due to malfunctions of nerves or simply being someone who was not introduced to pain until school age not sure but now live in pain everyday a cruel turn of events but would like to know if anyone else out there has had some similar situation since i am 35 now and am curious to see if there is any link between what i have experienced as an adult and what i had as a child

first time user's picture

same here

I actually was on this site to see if there was anybody else who experienced the same.
I went a lot of life with my parents asking me where I got this bruise from or this cut, I would have no clue.
Then, in college I felt something and went to my doctor, turned out I was internally bleeding and had a cyst explode some organs before I even felt anything. They had to convince me it was an emergency, I kept begging them to let me take my exams, etc.

They had some docs (probably psych) work with me in the hospital to "get in touch" with my pain b/c they said it wasn't a good thing to not feel pain and that I should have felt what I had long before it got that bad.

Sometimes, I wish I went back to not being aware of pain at all, but know it isn't realistic. I still consider myself to have a high pain threshold (currently have 2 ruptured discs and can put off surgery until it gets bad...only way for me to measure it is when I can't feel my fingers; I do have some pain, but not as much as the doc says that should hurt).

I don't know if I have what this describes, never even heard of it, but I wonder if there is something to what I used to describe as a "high pain threshold."

Chris's picture

questions..

I was born with this "problem" I guess everyone calls it. I'm nineteen now and I couldn't feel pain until I was 16 when I hit puberty and my parents put me on acutain. One of the side effect of it is that it makes people feel overly sensitive which happened to make me feel pain almost like a normal person but its still easy for me to ignore altogether. Especially with broken bones given that I've broken my leg in half and just realigned it and kept walking around till I had time to go to the doctor. I miss not being able to feel but I learned what not to do just from peoples reactions. I hope this helps some people out with some of their questions. I don't think anyone knew what this was when I was born and even I just recently heard of it.

Lucas's picture

School Project

I've been doing this compulsory Research project as part of the Australia High school curriculm and my topic is "congenital analgesia and how it affects the lives of sufferers." I've search almost a year trying to find someone I can interview. If possible, am I able to interview anyone on how the condition affected you and how you dealt with it?

Serendip Visitor's picture

CIPA

Hi Lucas,
My name is Tim Elliott, and i am a journalist at The Sydney Morning Herald. I am doing a story on CIPA and would like to find someone in Australia who has the condition, and is willing to talk to me about it. You can either email me on telliott@smh.com.au or phone 0419 370 651

Serendip Visitor's picture

CIPA

Hello,

my name is Claudia and I am a scriptwriter actually working on a scenario in which my main character who has CIPA. I don't know much about this "disease", being a fairly "young" one, and would like to know more about one's conditions as to living with this "problem". I've read most of the scientific articles but lack the day-to-day informations. I was wondering if maybe you could enlighten me with some past "personal" experiences and other details that could be useful to my character development.

Many thanks,

Claudia Loviselli.

Vickee's picture

LOTS of injuries

I have hsan v and ive had it since i can remember. As a kid i never cried. One of my first experiences that i can remember was when i dropped a picture frame on my hand and had shards of glass sticking out of it. All i remember thinking was that the blood was cool. My parents didnt think it was so cool at all. Another time i found a knife and thought it was cool looking so i was carrying it around. I was holding it by the blade. After a while i felt something wet. I looked down to see my hand literally dripping and soaked with blood. When i was in grade school i scratched my hand a little (or so i thought) on my locker and while we were saying the pledge looked down to see a blood stain on my shirt. My hand was also soaked in blood. The teacher and 3 kids passed out and i just stood there as surprised as them that i was bleeding. When i was four i woke up to a pillow soaked in blood and pus. It turned out i had an ear infection that i couldnt feel and my eardrum didnt pop, it literally exploded under pressure. I broke an arm and continued to do cartwheels and stuff. When i was 7 i stuck a push pin in my leg because i wanted to see what would happen. When my dad showed me the trick where you swipe a finger through a candle flame and ut doesnt get burned. I thought i was magic because i could just leave it there and it didnt hurt. Ive fallen a story onto a wooden floor and just got back up like nothing. One time i was swinging really high and the swing broke. I fell onto concrete and again, git up like it was nothing. I had pneumonia and broke 2ribs just because i was coughing so hard and i didnt know it hurt. Whenever i get sick the doctors think im faking because i just dont seem miserable enough byt the tests always come back positive to their shock. I used to constantly chew on myself wgen i was a kid not knowing it should hurt. And these are just a few examples. Feel free to email me vmhw1120@gmail.com if you have any questions, ill be happy to answer them because there are a lot of misconceptions

azeem's picture

i live in saudi.i am in fever

i live in saudi.i am in fever and pain body of partes.i feel cooling out side of body and i feel heat inside of body tell me madicine free

swaminathan's picture

CIPA

My wife's son is having this CIPA.
He is now 22 years.
His two leg joints were broken and could not walk.
He is taking cool water bath 50 to 60 times in a day.
Is there any medicine available to cure this disorder.
please help.
regards
swami
chennai
india.

Anonymous's picture

cipa?

my brother is 49 and has bad seizures since he was 19. we been noticing that he doesnt flinch at pain and doesnt make any sound at having pain. he doesnt understand things and doesnt talk right, using words that dont make sense in his sentence. sometimes he will say something right. he had pulled his shoulder out of socket and they put it back in without him flinching or yelling or anything. also he had a absessed tooth and never complained. he takes hot plates out of microwave and doesnt know its hot. and lots of other things that we noticed about him and pain.....do you think that the his seizures did this, doctors says he feels pain but we dont see it....because he has never showed it......so how would this doctor know this unless he checked for this. can anyone explain this to me? he is in the hospital right now and had a operation and doesnt show any emotions on any pain.

Serendip Visitor's picture

i believe that he is

i believe that he is suffering from some sort of neurological disorder. He oculd posiblly have Congenital Insensitivity to pain. The doctors may be wrong and he should be checked by other doctors. Has he always been this way? If he has then it can most likely be CIPA but if this developed after the seizures then i do not know what it may be. Perhaps damage to neurons and electric synapse in his brain but i am not sure. Please do not go with everything i say because i am not a profesional, i am simply a high school student.

Serendip Visitor's picture

Indifference, not Insensitivity

It may be that he has Congential INDIFFERENCE to Pain. This is when people do feel pain, but they don't have the correct reaction to it, i.e. taking their hand away from a hot stove when it's burned. this would explain why the doctors say he feels pain, but you're not seeing a reaction to it.

you also said that he is 49. Most people with INSENSITIVITY to Pain don't live past about 25. It would be very strange if your brother does have INSENITIVITY to Pain and has lived that long. Another reason why I think it is INDIFFERENCE to Pain.

mohammed salah's picture

please help

my brother have CIPA i need to know what ican do to solve his problem he is 7 years with chronic ulcer in his right foot

Serendip Visitor's picture

you cant solve this problem,

you cant solve this problem, all you can do is help him by keeping him safe and healthy.

Citae's picture

I think I would have know

I think I would have know about this sooner, but we live overseas for awhile, But I found out about my son in 1975

Betty's picture

i have this disorder WHAT DO

i have this disorder WHAT DO I DO?!?!?!?!?!?!

Anonymous's picture

CIPA

you shouldn't freak out. You should stay out of dangerous areas and find some treatment. Keep having regular check-ups with your doctor as well.

Citae's picture

CIPA

I have a son who is 35yrs old with CIPA, and his 11 year old daughter also has it. There has not been a case study on either of them, but now I know after all these years what his problem is, he never cried, and he never felt pain, he did daring things, he would not sleep, & has a problem with hot weather & he had broken arms, ribs, cuts and never cried and I would never know until I would take him for a check-up and the Dr would tell me he had a healed fractures, that I never knew about. It was not until he placed his hands on a hot burner on a stove while I was cooking, I had to remove his hand from the burner, because he did not know his hand was burning! When I took him to the ER and told them what happened, they thought I was crazy he had a 3rd degree burn and never flinched.Month after month of taking him to the hospital for injuries, but not once did he cry or yell from pain. His daughter is no different, she puts herself in danger without a pain.

khristena's picture

CIPA

i was reading womans post on the disorder. im excited to hear that her son has lived to be thirty five. i have a son who turned 2 Feb 22, 2010 who has the disorder. he has had countless injuries. did anyone ever feel awkward taking their child into public when they was all banged up? my son literally looks like he is abused, but isnt. The neurologist that he sees said that most of the time people with this disorder dont live past 16. I was advised to have my son seen by an optomoligist every few months to have his corneas checked for scratches since he doesnt respond to dust,sand... foriegn objects in his eyes. i can relate on the whole burnt hands thing. i left my son when he was about 10 months at his grandparents, mind you who are still old fashion, when i went to pick him up he had second and third degree burns on his palms and finger pads from touching the side of the wood burning stove. i was disgusted, saddened you name it...he acted like it didnt bother him. my inlaws had no idea that it had even happened. i just couldnt understand how...thats when we had to see a specialist not only for the burns but for neurological part of it too. thus resulting in CIAP. i didnt read all of the artical on the disorder, but is it really passed down through family....cause no one in my family or his fathers family has ever had the disorder. My sons Dr. said that it runs in the Navaho blood line??? we both have indian bloodlines, but mine is not navaho...we're not to sure about his family bloodline though. anyways...i would love to talk to anyone more about this, to better educate myself of course.

Anonymous's picture

CIPA Congenital insensitivity to pain with anhidrosis

Would like more information for research.

Kaleb Klein's picture

The pain is awful in my life

Hello Sarah, I would love to talk to you some more about your condition, for you see, I have never heard of such a disorder until a couple of weeks ago when I came across a plead for help from a father for a 5 and 7 year old boy and girl.

Regards,

Kaleb Klein

Anonymous's picture

i'm 4, what is this

i wish i couldn't feel, i cant feel emotion cause i has antisocial personality disorder, however not feeling pain would feel so much betters

Anonymous's picture

varying degrees

is it possible to have varying degrees of this disease? i have found that the older i become, the more tolerance to pain i have. i have several body piercings and they just don't seem to hurt while others i know think they hurt alot.

Vickee's picture

You probably dont have it

Congenital means present at birth so it could not build up over time. I have hsan v and ive had it since i can remember. As a kid i never cried. One of my first experiences that i can remember was when i dropped a picture frame on my hand and had shards of glass sticking out of it. All i remember thinking was that the blood was cool. My parents didnt think it was so cool at all. Another time i found a knife and thought it was cool looking so i was carrying it around. I was holding it by the blade. After a while i felt something wet. I looked down to see my hand literally dripping and soaked with blood. When i was in grade school i scratched my hand a little (or so i thought) on my locker and while we were saying the pledge looked down to see a blood stain on my shirt. My hand was also soaked in blood. The teacher and 3 kids passed out and i just stood there as surprised as them that i was bleeding. When i was four i woke up to a pillow soaked in blood and pus. It turned out i had an ear infection that i couldnt feel and my eardrum didnt pop, it literally exploded under pressure. I broke an arm and continued to do cartwheels and stuff. When i was 7 i stuck a push pin in my leg because i wanted to see what would happen. When my dad showed me the trick where you swipe a finger through a candle flame and ut doesnt get burned. I thought i was magic because i could just leave it there and it didnt hurt. Ive fallen a story onto a wooden floor and just got back up like nothing. One time i was swinging really high and the swing broke. I fell onto concrete and again, git up like it was nothing. I had pneumonia and broke 2ribs just because i was coughing so hard and i didnt know it hurt. Whenever i get sick the doctors think im faking because i just dont seem miserable enough byt the tests always come back positive to their shock. I used to constantly chew on myself wgen i was a kid not knowing it should hurt. And these are just a few examples.

Anonymous's picture

There are five variants of

There are five variants of this disease, but what you're referring to is the lack of pain from your piercings. I lack the pain when I get piercings as well. This is a totally different thing that occurs. The pain depends on the person when it comes to body modifications. A person with this particular disease does not have the sensation of pain and sometimes cannot produce sweat, which makes it hard to regulate body temperature.

I've been doing research on it as well for a paper on a medical disease. xD

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