Also called congenital analgia, congenital analgesia and congenital pain insensitivity, it is a rare condition in which a person can’t feel pain.
Who gets it?
This condition runs in families. Since the number of people with this is so small, no one knows for sure how it is inherited, so no one knows the chance of having a sick baby if you have the disease yourself.
Since the cause for the condition is in the genes, and since it is so rare, it is seen more in groups who marry amongst themselves (if someone carries a defective gene for a disease and has children with another carrier, the combination will give a new person with the defective genes from both parents). Examples for this are Gällivare, which is a Swedish village where about 40 people have the condition. It is also more common in Ashkenazi Jews.
What causes it?
Our body has receptors all over the body. They are nerves, which can feel all sorts of things. For example, they can sense the temperature and let us know if we are touching something cold or hot. They can sense where our body is in space. They can also sense pain.
When these receptors sense pain, they send a message to our brain so that it “knows” we are in pain. We will then stop the action which caused us pain and try to avoid it in the future.
For reasons unknown, in congenital insensitivity to pain the connection between the nerves that sense pain and the brain’s recognition of pain is missing.
How does it feel?
While at first the inability to feel pain may sound like a gift, the opposite is true. When babies grow, they experiment with their surroundings. When they feel pain, they learn that something is bad for them and stop doing it.
Not these children. Examples for what these babies/kids do to themselves include biting themselves deeply, breaking bones without feeling they did, poking their eyes with their fingers, biting their own tongues.
In some cases, this condition also contains anhidrosis, which is the lack of sweating.
You can also read about one of the girls in the film in this article.
How is it discovered?
Usually the story is enough to understand that a child has insensitivity to pain.
How is it treated?
There is no cure. The emphasis in treatment is on the prevention of injuries to the child. It can be difficult in young children.
These children should avoid jumping from heights, and also avoid certain sports such as those involving kicking. It’s also important to take care of their skin and monitor it for injuries they may not notice.
The bottom line – How do I avoid it?
Since the condition is genetic, and the method of heredity for it isn’t known yet, there isn’t a way you can prevent it.