“Joy, can you help me to bring that remote control beside you?”
“Ok mum” replied Joy as she proceeds to take the remote beside her. After taking it, she moves to her mum and as she was about to hand over the remote control, she suddenly falls to the ground.
“Joy, joy, oh my God” her mum starts to move frantically around the room. She becomes uneasy, anxious and suddenly disorganized within her because she knows that getting her to the hospital as soon as possible is the best bet.
After a few seconds, she gains control of herself and takes her car keys. She carries her daughter to the back seat of the car immediately, and starts to drive. The only thing she is able to do at that moment is to worry and hope for the best. It is impossible to ask her daughter about how she feels because nothing will come out of it. The only thing on her mind is the safety of her daughter and how much the condition of her daughter has changed so much in her life. As a single parent, she has done so much to keep her daughter safe.
She feels guilty that she has been unable to do everything possible for her daughter, but deep down within her she knows there is nothing more she could have done for her daughter than she already did.
She sees the nearest hospital and enters the premises. She takes her out of the car and even though Joy’s eyes were wide open, she knows that a problem has occurred and not even Joy knew what it was
She takes her in as the nurses also help them into the emergency ward.
The doctor comes in, and begins to examine her. He noticed that she looked fine and was not complaining of any sort of pain. He also noticed there was no indication from her expression that something was wrong with her. As a doctor, he decides to proceed with the normal protocols. He asks her how she was feeling as he prepared her for a scan.
He calls her mum inside
“What is her name?” he asks her mum
“Joy” Joy answers by herself
“Ok. How are you feeling? Where do you feel pains?” “I am not feeling anything” “you feel nothing?” as he asks, he has started to suspect something: a condition he learnt about a few years ago. To be sure, he asks another question
“No headaches? No dizziness? No bizarre feeling from what you feel normally?
“Did my mum not tell you anything?” She asked. By this time, her mum had told the nurses but it had not been relayed to the doctor.
“Can you tell me yourself what you want to tell me?” the doctor thinks he knows what she is about to say but does not just want to jump into conclusions
“I think you have an idea of what I want to say” said Joy
“I have a feeling I know what you are talking about” replied the doctor
“I bet you do”
“Do you have this condition: …….?”
Congenital Insensitivity to Pain Anihydrosis
The doctor was right. Joy was suffering from the condition, hence, the reason for her sudden slumping in the living room, whimpering in zero sense, complaining of nothing, and feeling comfortable in an emergency ward even though something serious must have happened to her. All of this is for a reason: Joy can not feel any pain.
Congenital insensitivity to pain Anihydrosis, also known as hereditary sensory and autonomic neuropathy type IV is a very rare genetic condition that affects just a small percentage of people all over the world. What CIPA means in clear terms is inability to feel pain and in many cases temperature and temperature changes.
This condition is hereditary and lowers the rate of survival of the one affected with it. This is so bad that the affected cannot sweat even a drop no matter how hot the temperature of a place is, or how much work is done.
For those that see it as important, the stress of checking body temperature every day, constantly checking for cuts, bruises in the body is something they have to put up with.
They cannot do extremely difficult work because no matter how much work they do, they do not feel the impact even if their body feels tired already
They cannot feel cold or hot temperatures even if they put their feet in extremely cold or icy water and if they pass through fire.
Many of them have their milk tooth removed after birth so that they do not harm themselves, as such young children will feel no pain even if they bite themselves
The unfortunate thing about this condition is that their rate of survival reduces as they grow older as many do not live pass their twenties. Also, their inability to sweat becomes a disadvantage as they develop hyperthermia. As of now, there is no cure to CIPA.
Many around them suffer with them. What do I mean by this?, Their parents have to devote all their time to them by keeping constant tabs on their health and well-being. Those suffering from the condition are mostly unable to live a normal life. Many families have suffered loss due to this condition as a result of suicide committed by victim of this disease. Majority of patients suffering from this condition refer to themselves as a burden to their parents and people around them while some get fed up of the constant attention from their parents. To them, it feels like overprotection and smothering.
Many worse things have happened because of CIPA. Many get harmed or die because they hitch their cornea too often and feel nothing close to pain. Because the injuries on their legs are too much, many have had their legs amputated.
It is therefore right to say that CIPA patients are a ticking time bomb that can explode at any time because pain is like a bell to ring to us how much risk we can take. They do not get warnings that pain gives us
TICK, TICK, TICK BOOM; they explode. They suddenly faint, pass out or in many cases, die suddenly
The numbness they feel all the time must be very horrible. The feeling they will get if they can feel pain will be poor elation. Euphoric is what they will be.
It is for this reasons that Joy had no idea what was wrong with her in her body. Pain management involves asking patients about how they feel and then making a medical decision based on tests, and the feeling of their patients. This cannot be done for patients with this condition. Doctors have to go through extra work for them in order to understand what their patients’ condition is.
So whenever you feel cramps, back pains, stomach aches, headaches, or other intense type of pain; remember that some people want what you hate so much. Whenever you feel that the pain you feel should stop, do remember that many would pay anything and give everything to feel pain.
Stella Olanike Agboola
Obafemi Awolowo University, Ile-Ife, NIGERIA