Pain or death

There’s a famous quote that says « The history of man is the history of pain » as people are born with pain, they fight with pain and eventually die in pain but could you imagine how would be to not feel pain ? No more tears, screams or pain killers.

Many  would say that it would be great but that’s  definitely WRONG .

Pain plays a very important role in our lives so if I were to define it I would say that it’s how our body tries to comminicate with us which means that when something in our body is in danger or malfunctioning it tries to tell us protecting us from further damage .

There’re acctually few people around the world who don’t feel pain at all , they are born with a rare disorder called congenital insensitivity to pain with anhidrosis (CIPA) also known as hereditary sensory and autonomic neuropathy type IV(HSAN IV) .

This rare disease is caracterized by the inability to feel pain and differentiate between temperatures also the abscence of sweat and lacrimation (tears) .

Because there’s no cure to this disease so living with it is very difficult , Most patients have some form of mental retardation and have a hard time telling when they’re hungry or need to use the restroom which is why they must have a regular eating and bathroom schedules . CIPA patients must visit their doctors regularly to make sure they don’t have any internal problems such as appendicitis , blood poisoning , heart attack, swollen joints, infections or bone fractures also they must constantly check for bruises , cuts, self-mutilations or other injuries that’s why they must wear protective eye wear sot hey don’t scratch their eyes and in some cases teeth removalis is needed to avoid self-mutilations especially for kids not to mention that all of the patients use a mouth guard to avoid damaging their tongues . As for children with CIPA we constantly have to make sure that there isn’t anything dangerous or life threating within their reach .

Many studies have proved that the majority of CIPA patients die from fevers before the age of three so what causes this disorder ?

CIPA is caused by mutations in the NTRK1 gene, which gives the body instructions for making a receptor protein that attaches to another protein called NGF Beta. The merge of these two proteins is very essential for the survival of nerve cells but when there’s a mutation in the NTRK1 gene the neurons don’t get a signal and in time die by the process of self destruction , in another word the reason why pain messages don’t reach the brain is not because they’re getting lost in the process , it’s because no one is sending those messages .

CIPA is a rare autosomal recessive disorder which means a person must inherit two copies of the defective gene for the disorder to appear , if they inherit the defective gene from only one parent they become carriers  and can then pass the defective gene to their children . It has been also found that CIPA is more common between people whose parents are closely related or share a blood line . Because CIPA is newly known condition there are no reliable statistics of how many people live with it , also there aren’t many documented cases due to the patients’ short life span .

Apart from all of these scientific facts , I must admit that as I was digging further into this rare disease I came to appreciate life even more and I concluded that we feel pain because we’re alive so as annoyingly as pain can be we must always remember that without it we wouldn’t be able to do the activities we’d love so much . If I may be emotionally compromised in this topic I have to say that the life of CIPA patients is tragic and miserable and the saddest part of it is that  they’re unable to define and locate the pain even when they’re on the edge of life and this fact of insensitivity to pain make it hard for doctors to diagnose their illness and that results in decreasing their rate of survival. Moreover doctors often analogize CIPA patients to a time bomb that could blow up any time which is  theoretically true but I strongly believe in man’s desire for life and in his willingness to survive so wether they’ll live a long life or die early depends only on them but in case you’re wondering about the life of CIPA patients I would say that it’s neither cold nor hot ; actually living without senses means that CIPA patients don’t have to freeze but they feel no warmth either so they just try to learn how to cope with their unusual life each and every day.


1 Comment

  • Great post ! Your writing inspires me , you describes somethings that came to my mind that I think we must talk about them .
    you are a talented girl
    go on ..
    With love

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