Serendip is an independent site partnering with faculty at multiple colleges and universities around the world. Happy exploring!

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

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

Serendip Visitor's picture

cipa

I also came across a patient Aliza in pakistan at Indus Hospital Karachi whose foot had to be amputated due to infection,and gangrene. I also got to know that one of her cousins died at age 12 with the same disease. Dr.Faiza Herekar

Anonymous's picture

More about CIPA

Hi,

I was wondering if you could share some more insight on this disease. I have a brother & sister who suffers from it. They are 17 & 18 yrs old respectively. I am the eldest.

I am desperate to know if this is hereditary & whether me too would have children akin to my bro & sis.

They exhibit all the symptoms of CIPA like no feeling of pain, variation in body temperature. Biting their fingers & digging their wounds. I know it's scary but have grown with them & am used to it & love them.

We take a lot of care to see that they do not hurt them selves.

Anonymous's picture

CIPA

I nanny a boy who has CIPA. It is genetic. The doctors told them if they were to ever have another child it would be a 1:4 that it would have CIPA. Both parents have to carry the gene in order for it to mutate and that resulting in CIPA. I am glad to hear they are that old. Gives me hope that the little boy I tend will live longer. He is 8 now and has suffered everything possible. Broken every bone, infusions, infections, etc

Serendip Visitor's picture

My Brother & Sister are now

My Brother & Sister are now 20 & 21 respectively :)

They do have mental retardation as well as broken bones in the legs especially. My sister cannot walk and my brother limps badly.

But they are healthy in terms of bodily functions and living life happily.

Let me know if ppl here need any help in terms of knowing more about this.

Mari's picture

CIPA

i have full CIPA and having dealing with it most of my life... things dont change all that much in my opinion I still think about the same things as every body else.... if I fall I mimic what i have seen everybody else do and it has been like that almost my whole life..... I have found that curiousity of people gets the best of them but I am a very old CIPA patient and have a great life.. I have a boyfriend and check my body many times a day just to make sure I didnt get hurt by accident as I am a clutse. LOL but I just think about the same things you do if i find a bruise i look it over and check it often to make sure nothing under it is broken but basically as long as you dont have 3 days worth of questions my yim is marianne_edmiston2000 and i dont mind sharing plus I love to talk to people and find out there opinions on my disease.. thank you for reading and letting me talk...
mari

Michelle Edmonds's picture

CIPA

My 13-year-old adopted son feels NO pain, he never knows he is hurt unless he sees blood and even then he has to make sure it is HIS blood...he gets burned and has no clue, he breaks bones, and feels nothing...he got an infection so bad in his foot that the infection went into the bone and he nearly had to have part of his foot amputated and didn't even limp!!!! The doctors will not diagnose him with CIPA because his body temp has always been stable (unless he has a fever) and he does sweat (especially his feet...UGH!!!)...he has NO clue what pain is so has no empathy for others who have pain. He will, as you said, mimic others' reaction to an injury, but with a smile. And when I say "you're fine, you can't feel anything" he will laugh and stop pretending that the injury hurts...when he was a baby he would get hurt and not cry. We would say "that aught to hurt!" so when he would fall or something that is what he would say, "That aught to hurt!" but with a laugh, not tears...even when he cut his side to the ribcage!!! "that aught to hurt!"...anyway...it would help to talk to someone else who knows and understands...
Thanks,
Michelle Edmonds

BTW...he is bipolar, ADHD, OCD, Asperger's Syndrome, was born addicted to crack, marijuana, and alcohol...he has essential tremor and cyclic vomiting syndrome...he should be the poster child for why you should NOT do drugs/alcohol while pregnant (or ever!)...

Anonymous's picture

How do you cope?

I'm doing a science project on genetic disorders and I choose CIPA. I would just like to know how do you cope with such a rare and dangerous disorder. I would really appreciate if you would write me back. Thanks

Serendip Visitor's picture

Research for a Novel

i'm writing a novel where one of the main characters has a more extreme form of CIPA, which will be fictional. This fictional disease is so far unnamed, but I'm basing it off of CIPA. You see, my character can't feel anything. Until I research CIPA more, I won't know the details of what she can and can't feel, such as pressure or pleasure. Because CIPA is the closest I can get to this new disease that I am fabricating, I'd like to talk to you about your reactions to things. It would be extremely helpful in my research and it would assist me in creating this fictional (and so far, unnamed) disease.
please feel free to email me at HG3012@k12.sd.us =)

Anonymous3's picture

CIPA

When you say that you mimic what other people do, do you act like it hurts so that others don't find out about it? Also, do you ever wish you knew what pain felt like? Thanks for reading. I'm very interested in your syndrome. :)

brianne's picture

CIPA (HSNIV)

if anyone is having trouble finding information about the disorder, basic or that of detail, read the journals and studies done by Dr.Yasuhiro Indo, he is considered the highest expert of CIPA and related TRKA-NGF studies.

Brett Powers's picture

I am doing a project on this disorder

Hello
I too am doing a genetic disorder project and was wondering if i could use this web page as a source. Also I am very intrigued by this disorder and wish to learn a lot more on it.
Thanks,
Brett

Anonymous's picture

CIPA

who is the doctor who discovered CIPA in 1959

Anonymous's picture

who dicovered CIPA in 1959

I am writing a paper on CIPA and not finding basic information,who dicovered it,when and how they discovered it.

Anonymous's picture

questons

how long do they usaly live??

Serendip Visitor's picture

they probably live the same

they probably live the same life span. dont quote me on it tho.

Meggan McGrew's picture

Hello I also am doing a

Hello
I also am doing a project on CIPA and was wondering if you would mind me using your page as a source of information.
Thanks,
Meggan McGrew

ABDULLAH's picture

MY DOUGHTER CAN'T FEEL THE PAIN BUT CAN SWEAT

I’m from Saudi Arabia my daughter have this syndrome. She is 1year and 6 month. We discovered her situation at age of 6 month when her teeth start to grow, in that month the front 4 teeth grow then we notice that she is pitting her fingers we get afraid so I start searching about what happen in the internet and when we meet the Doctor I gave her my input and told her what I have read bout this syndrome. She directed us to a nerve specialist and she told us that she had this syndrome. They make a chromosome test to find out whether or not it’s a sex-related and a result came that its not.
They said there is no medication for such case and you have to take care, watch, and examine hear always. Later I notice that my daughter can sweat I took her back to the doctor and she told us still she can’t feel the pain and she do not have a complete syndrome. From time to time she hurt herself last week she get a 3 degree inflammation.
I’m wondering if there is any way to help her to feel the pain. I’m planning to visit a specialist doctor in Bahrain who use burble medication for nerve problems.

Another Biology Student's picture

Can I use you as my Human Contact?

I am doing a half a semester project on Congenital Insensitivity to with Anhidrosis in my Biology class, and I have all of the information that I need; except a Human Contact. I am working on my paper right now, and I cam upon your article and I would really like it if I could contact you, or vice versa, and interview you as my reference.

Thanks!

Anonymous's picture

I have a few questions about

I have a few questions about CIPA. I am a student in Georgia doing a research project on this disorder. One of my most important questions is that, do they know the chromosome that is responsibly for this disorder? My other question is, is it possible to know that your child may have this disorder through gene theropy, is it tracable, and is the disorder reccesive or sex-linked, if it is inherited?

carmela rivadeneira's picture

About CIPA

Your article is really good. I´m from Argentina and I´m a psicologyst and my speciality are anxiety disorders. I feel curiosity about the role of the amigdala in people with CIPA, as they don´t feel pain, then they maybe don´t feel danger, so how does the amigdala behave in these case o disease? Thanks a lot.

Anonymous's picture

this website helped me lots!

this website helped me lots! im dong a project on genetic disorders, and my topic is CIPA
this is such a fasinating subject!

Anonymous's picture

This article is very

This article is very interesting. For my biochem class i chose to research CIPA and we were assigned to make a webpage on it on scionline.org and its under the chemistry section. If anyone would like to go on it and adjust what i have found that would be great!

Anonymous's picture

Congenital insensitivity

Having this genetic defect myself has caused problems thoughout my life. Second degree burns. Fractured or even broken bones etc. I would be interested in hearing from others or contacting a research facility in Ontario, Canada could anyone assist me.

Karen

Anonymous's picture

i have a similar condition

i have a similar condition which as of yet has not been completely diagnosed.
as i went thru puberty i gradually became indifferent to pain completely (i can feelit,but it does not cause pain)

i do not know about ontario,but dr. james brower at mcgill in quebec was very helpful for me in setting up appointments at the university.

to those who watched house, i have not heard before that that cipa was more common among ashkenazik jews (its more known among swedesh really)
however, i am an ashkenazik jew

Anonymous's picture

I hope not to offend you or

I hope not to offend you or make you uncomfortable by asking, because I know you've heard and answered millions of questions, but I am a high school student and I chose this disease to do research on. I have so many questions for my own curiosity, but a general question would be: On a day to day basis, in the beginning, did you ever forget you had the disease? Have you ever thought, "Oh crap, that could hurt me if I could feel it."? Or on the contrary, is the disease on your mind every second?

I can assume you are not happy about having this disease, not even including that it is said before that no one with this can live to be older than the age of 25, but have you ever in your own thoughts proclaimed that you were happy to not be able to feel pain in some circumstances? Going to the doctor and getting shots, have you ever felt relieved that you couldn't feel the prick? Of your friends and family, have they often described to you what some feelings are?

I am doublethinking of whether or not you have feeling at all. I want to assure myself that you can feel if someone touches you or pats you on the back, but is it just to an extent of force can you not feel someone's touch? Can someone gradually pinch you until they feel it would be painful, or do you not even feel the first stage of the pinch because not everyone has the same level of hurt with the same level of intensity of pain? What might hurt you might not hurt a college football player or something. That question is just asking if you are extremely sensative or can you withold someone touching you at any rate? *Or is it that you can feel everything, but nothing ever hurts?

[I'm having difficulty phrasing that question correctly. :)] Ok. Do you think your brain knows when to stop letting you feel something or does your brain simply let you feel nothing at all, because it doesn't know how much pain you can sustain?

Anonymous's picture

I HAVE CIPA AND CAN POSSIBLY ANSWER SOME OF YOU QUESTIONS

I am a 60 year white female who has a PHd and two masters degrees. Back in 1950 when I was born, there had been no research on CIPA. I now wear a med alert bracelet which states my full name and that I DON'T FEEL THE SENSATION OF PAIN It also does say that I am allergic to pain medication(In reality, i CAN TAKE TONS OF MGS OF ANY PAIN MEDICINE AND I HAVE NO REACTION TO THE MEDICINE AT ALL, I COULD TAKE BOTTLES and BOTTLES OF DILAUDID WHICH IS A STEP UP FROM MORPHINE AND NOTHING WOULD HAPPEN UNTIL MY HEART WOULD STOP BEATING. The conditions do not frighten me at all. I go through the day without even thinking about my condition---I am super busy as a professional educator and I sleep only 4 to 6 1/2 hours at night which is induced by 12.5 mg of ambien--a hypnotic drug for sleep. If I didn't have the ambien, I wouldn't sleep at all. I am carefully monitored by my primary doctor who I have had for 15 years and works in DC. I was a hyperactive child.Though, at the time, they had no labels for such a condition of hyperactivity. I was also a DES baby with a congential right eye defect, right ear hearing defect, right nasal deviation too. I weighed 4lbs at birth. Birth was by C Section. I inherited "intelligence" and a natural curiosity about everything. I was not afraid to try anything. I crawled up on the stove with the burner's on right next to my mother and my mother almost had a heart attack--I was only on the burner's for a second because my mother screamed and pulled me off--but, I felt no pain. I rolled over my sister at three in my sleep and hit the concrete floor--suffering a very bad concussion and remember crying in the crib because my mommy wasn't with me. I was throwing up but I wasn't feeling pain.
In my adult life, I fell and broke my right arm on the ice, no pain, but I noticed when I went back to teach a class of 9th graders that it was difficult for me to open my desk drawer, I couldn't manipulate my fingers into a natural position, so I went downstairs after class during my planning period and told the Vice-Principal that I was going to the local er because i Had just broken my wrist. Though he remained amazed at my nonchalance, it was confirmed at the hospital that it was broken. I had a car accident and totaled my car. The ambulance arrived and encouraged me to go to the hospital which I legally refused. I just said that my wrist kinda hurt at this specific point--there was no bruising swelling etc. I just said I would just put some ice on the pinpoint that "sorta was sore". I saw my primary the next day, told him about the accident and said that at this particular point on my wrist is "was sort of sore". I saw him again about five weeks later and just said it was still "sort of sore sometimes" He gave me a referral to the orthopaedic doctors downstairs and three weeks later I had my appointment stating that at a particular point on my wrist it had been sore but was feeling better after almost eight weeks. He exrayed my left wrist and I walked around in a cast for three and 1/2 months which I found terrible difficult to coordinate my active life with--driving was nearly impossible and I DIDN'T HAVE TIME TO HAVE A BROKEN WRIST CASTED UP TO MY ELBOW for almost four months.

Additionally, I have had 3 falls over the past 10 years, like following over one of my cats chasing the other one from room to room and landing and breaking a 3 foot high porcelien cat, cleaning the mess up from the broken pottery was my first priority; then I looked down and saw all the blood running down my leg. So, i went into the bathroom, took a shower, to get the blood off, got dressed again for work, started the car to pull out and noticed that my dress had blood on it. Car still running, I took a kleenex and wiped away the blood and saw that it was going to continue to bleed so I decided I would run by the local er and have them clean it up and put an ace bandage on it before going to work--if I timed it right--I could still get to work on time. So that's what I did. On the ER form I just said I had cut my leg starting at the knee and going
down about four inches Would they just take about five minutes to clean it up? Thank you. The triage nurse eventually called me in and said to me, "you cut your leg at the knee, does it hurt? I responded "not at all" She then said, Would you lift your long dress for me to take a look at your cut. I said, sure. I THINK THE NURSE ALMOST FAINTED AND SHE PRESSED SOMETHING ON HER DESK AND THE DOCTORS CAME RUNNING IN. They were horrified at what they saw--cartiledge was hanging out of the cut and I insisted that I was not in pain, just clean it out, stitch it, and bandage it, and I would go on to work. I signed a legal form not to take any shots of lidocaine that they wanted to give me so I wouldn't feel any pain and I just kept telling them that I just wasn't feeling any pain. After they stitched me up, gave me a tetenus shot and a prescription antibiotic to prevent infection they asked my if my primary
doctor who worked out of the hospital knew that I had this condition and I said "Sure he does( and he did) he never has made a big issue about it nor do I. I have had two other massive stitching sessions in the ER on my leg and on my chin with no medication and no pain. I finally put a dead tree root on my property through my bare feet and that dropped me to the ground but I wondered why--Cartlidge and muscle if I remember correctly were oozing around the stuck tree branch. I knew I had intellectually hit a primary nerve in my foot as I had an odd sensation going up the side of my leg to my thigh. I sat on my rear until I got to the car climbed in, asked my step-son to get the keys to the car and told him I'd be back in about an hour, I was just going down to the center of our Pocono Town. I got to my doctor's office at noon when they were closing for lunch and said that I needed to see my doctor for a few minutes. The secretary took one look at my foot and screamed for my doctor. He wanted to carry me back to the surgical suite, I preferred to walk. He wanted to give me a local. I preferred he wouldn't. He deferred to my judgement and we laughed at the situation--I had been looking for my cat on the forested part of our property as someone had yelled black bear in your yard. I went down on a tree branch that was dead--when you think about it it is a little funny. He removed so much forest from the bottom of my foot, and cartiledge, sewed me up, gave me a tetnus shot and antibiotics and said to stay off of it for three days. He gave me crutches. I told him I could handle everything BUT Sunday Morning I had to preach to approximately 200 members of our church. We compromised and I got to preach.
So, I wear a med-alert bracelet that also has my name, my doctor's name, his phone number, my next of kin and his phone number on my third med-alert bracelet and I go about my normal busy professional and personal life with too much adrenaline in my system. They are really afraid of getting into the position of choosing to give me an epi shot because of the amount of adrenaline in my body. But, I have allergies seasonally and seriously and am totally and severly allergic to all antihistamines--including benedryl, clareden and sudafed.

I do sweat profusely and run the air conditioning in the winter in Washington, DC. on high so I am not sure if I aM totally a CIPA lady. I match all the other symptoms. I feel the "warmth" of an emotional hug, I feel the grip of a handshake--I just don't feel pain and I am hyperactive and well known professionally in this area of the country. THe answer is no--i haven't had any genetic testing but my daughter does feel a little pain but not much. She is 32 years old. My son has a natural response to pain and he is 33. If anyone would like to communicate with me I will reply and give you as much specific information that I can.

Lucas's picture

School Research Project

You are so helpful!! I was wondering if i may be able to email you so that I can ask some question for my school research project. My topic is "congenital analgesia and how it affects people who are living with it" Are you able to help? it has been so hard to find people to contact who have the condition

Serendip Visitor's picture

Greetings.

Greetings;

My name is Ashle, I am 25 years old and currently studying at Institute of Holistic Nutrition

I had a cousin who just recently past from CIPA he was 10. Ever since he was a baby we noticed certain things that he would do that you wouldn't normally see. It went on for along time before it was brought to everyones attentionwhat exactly it was. It was so painful and hard to watch but it became something that we started to adapt to seeing. He would often throw himself down stairs as well as chew his fingers/toes/tongue anything he could get his hands on.. It had a a heart of gold and loved cars very much! he was very precious to us all. His mother had a really hard time with it, and actually abanded him an erased him from her mind as though he had no heart and feeligns of himselve. it was awful, thankfully my uncle took full love and compassion for him along with others surrounding him,

I am currantly doing a project on CIPA and I need to write a detailed discription of the disease and what the major symptoms and long term complications, significatn causative factors-physical/mental/emotional/nutritional factors.

Also if you know any infomation/websites on what is exactly going on within the body with organs/nerves etc.

I would really appreicate it, I want to do this for my cousin for his spirit

hope you are well.
Ashley

Nisa's picture

Hello. I am a student in the

Hello. I am a student in the sixth form in UK doing a research on this particular disease. This research projcet is one of the activities conducted in my school to get us ready for uni life. I am trying to find patients with this disease to interview. I found your story fascinating. Most of the articles said that CIPA patients only live up to 25 years old but you live up to 60 and very successful. I am sorry if I offend you somehow. Is it possible for me to interview you in some way? I want to ask a few questons. Please contact me as soon as possible through my email.

Brenda's picture

CIP

I was diagnosed with this disorder in 1959. I was one when it was discovered. I too have had the broken bones, burns and various other problems that come with this disorder. I have always been curious if anyone knows the longest someone with this disorder has lived. The most serious problem I had was a benign ovarian cyst that was the size of a vollyball before it was discovered. I would enjoy hearing from you.

coleton brown's picture

CIPA

If you wouldnt mind answering these ?s i need some info about the disese you have for my biology report. I watched the episode of House that had this disease on it and i wanted to know everything you can tell me about CIPA if you wouldnt mind.

Iza Mc's picture

Hello Ms Brenda, I would

Hello Ms Brenda, 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 coulpe 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,

Iza

Asmaa Benyouref's picture

Two little poor kids with CIPA desease in Morocco

Hello,

I am writting to you on behalf of parents of two little kids with CIPA desease. These kids are very poor. They lost their toes and little fingures. Please let me know if you can help these little two kids. Pictures are available upon request.

Thank you

Justin's picture

just wanted to ask a few question.

I don't have the answer to your question. But I would like to know more about your disorder, no offense. Is it where you feel no pain at all? (You said CIP) or is it something a little different. If you have the time to reply back, that would be great. I have been wanting to meet someone that cant feel pain, I have some question about it. Well thanks,
Hope to here from you.

>Justin

aylin's picture

This is a great article. I

This is a great article. I had heard about this much before Grey's Anatomy and House used it as a storyline to tv. It's incredibly difficult to perceive and I look for more and more on this condition.

Anonymous's picture

the reason why i discovered

the reason why i discovered of such disease was because of the medical drama dr. house.. its so interesting yet dangerous for people with such rare condition.

Dana's picture

I really like your article.

I really like your article. I am currently a biology student and I am looking for research on CIPA and your article helped me out greatly. Thanks for all the wonderful information. You did a great job!