Pain is an inevitable part of life that can result in a sting from a paper cut or ongoing chronic pain illnesses that highly affect overall quality of life. Experiencing pain can have a range of side effects, including altered sleep and sexual function, difficulties with mental health, and limitations on completing basic tasks.   So imagine if you never felt pain – and could never feel pain. Would that make life better or worse?

About 1 in 125 million people are born with an extremely rare condition called congenital insensitivity to pain and anhidrosis (CIPA). It is a type of hereditary sensory and autonomic neuropathy. Those with this condition cannot feel pain and do not sweat normally (anhidrosis), which can result in very high fevers causing seizures when in a hot climate.

While not experiencing pain may seem like a relief, this condition is seen as very dangerous and most patients don’t live past age 25. They can’t feel extreme temperatures, and since they can’t sweat, they may be unaware of being too hot. Often patients end up self-mutilating by accident, mostly causing harm to the extremities and teeth, lips, eyes, and tongue.

Cases of patients who have CIPA often reveal infections from wounds that went unnoticed and untreated, including bone fractures and joint problems. Those who suffer from CIPA need to be vigilant about checking themselves over for cuts, bruises, or other trauma that they may not even realize is present.

CIPA is an autosomal recessive genetic disorder caused by a mutation of the gene that encodes one of the receptors for nerve growth factor, which normally signals embryonic nerve cells to grow, divide and survive. In CIPA, the mutation means signals are not transmitted and neurons die, leading to less sensory neurons and the inability to feel pain. Nerves that lead to the sweat glands also die, causing anhidrosis.

Those with CIPA typically have specific signs and symptoms, which start in infancy, in addition to the hallmark sign of being unable to experience pain:

• Areas where hair doesn’t grow on the scalp
• Deformed fingernails or toenails
• Exhibit signs of emotional instability or hyperactivity
• Many individuals have an intellectual disability
• They may have hypotonia (poor muscle tone) in childhood but that can improve as they grow up
• Urinary and fetal incontinence

There is currently no cure for CIPA. Treatment is focused on regulating body temperature and preventing self-injuries, while being sure to quickly treat any injuries that are discovered.