The Pain of Feeling No Pain: Congenital Insensitivity to Pain; a Rare Disease.

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A few of us had to go through severe physical pain once in a lifetime. Many of us had to go through it a lot of time. However, there are a certain group of people who do not feel physical pain at all! Only thing their body realize is pressure. Pain does not affect them. To be precise, their sensory system is weak; so weak that when their hand is constantly beaten with a hammer, they feel no pain whatsoever. To many of us, this may seem like the greatest thing that could ever happen to them. However there is a flip side to all of it. To understand this disorder which is known as Congenital Analgesia or CIPA (Congenital insensitivity to pain with anhidrosis) let us look upon the reasons by which it arises.

Happens to someone because…
CIPA is a part of a disorder family known to many as hereditary sensory and autonomic neuropathy or HSAN to be precise. People with such a disorder have problem in feeling any kind of temperature changes or pain. People of this type have a loss of perception of senses. Pressure is okay, but they do not feel pain. Because of this disorder, such people often hurt themselves severely without ever meaning to.

How does it happen?          
Such a disorder is an Autosomal Recessive disorder. The meaning of which is that for someone to own this disease, the child must receive the copy of mutated gene called autosome chromosome, which is irrelevant of any gender from both the parents.
And how it works is quite simple:
You have a nervous system, made up of complex network of your brain, spinal nerves, Spinal cord and various other things like sensory receptors and things like ganglia. Your sensory nerves carry message to your spine when you hurt yourself like when you stub your toe, this message is then taken directly to your brain and it says, “Ouch!”.
Peripheral nerves are the ones which make you feel pain. At the end of them are receptors that sense pressure, temperature and touch. A few of these nerves end in nociceptors; which are the ones who send electrical impulses along your peripheral nerves which take message to your brain through your spinal cord. Axons of these nociceptors are Unmyelinated; meaning, they are slow. This myelin is a sheath that acts as an insulating substance which covers nerves and helps in impulsive conductance. In simple terms, Myelin in excess means faster message. The pain carrying noniceptors can be either myelinated or unmylinated; meaning, messages can travel slow or fast. If the severe pain is experienced, nerves take faster path, as compared to slower path during ordinary injuries.
People with CIPA, have problem taking these messages to their brain. This obviously means that messages are lost somewhere in between. A few cases have revealed decrease or complete absence of nerve fibres.
In some cases missing such nerve fibres may lead to mental retardation. In other cases, it can be severe or mild. In severe cases, a subject maybe unable to perspire or sweat due to non-sensation of temperature changes in the atmosphere.

Taking care of the ones, not in pain:
Taking care of kids with CIPA becomes extremely difficult. It is only through hurting that a kid learns to create a defence mechanism for sharp things, like knives, and understands not to fondle with things which are extremely hot/cold. CIPA patients are unable to draw this limiting line as they can’t feel the pain by hurting themselves. Due to this, a lot of CIPA patients lose their life in initial stages. So it is extremely important for parent/family members of such patients to take extra care of them. A few points mentioned below may help them:

  • The child must be made to wear protective gear to protect his/her eyes.
  • Parents may teach the child to understand about blood. He should be made to understand that it is harmful to see blood on oneself. Pain he may not feel, but seeing a danger may definitely save his life.
  • Young patients should be regularly checked for injuries at particular intevals of time during the day.
  • People with CIPA are insensitive to their need to go to the restroom; hence setting a timer on a wristwatch may remind them of their need.
  • Specific problems with CIPA can be tackled with Physical therapy, like problems with the joints. A wheelchair should be used for the patients whose joints deteriorate. A person with this disorder should be taught to learn different ways to sit and perform physical tasks in a way that it does not further deteriorate joints.
  • Families with a child suffering from CIPA should choose to move to a place with cool environment. This is because the risk of overheating is ruled out by such move.
  • Although physical exercise is difficult for CIPA patients, it is advisable that they take up activity lie swimming.
  • Childproofing the house is another solution. Anything hot or sharp that may hurt the child should be kept out of reach of those with CIPA.
  • Families may gain comfort by talking to other families which might be dealing with the same problem.

It might feel like a superpower to feel no pain, but it is a dangerous condition. Not feeling pain will not tell you that your body has reached its limits. Banging your head hard or cutting you might need medical attention which only comes to you if you feel the pain of it.
It’s a curse, to not to be able to feel the pain too.