Patrice Abela was shocked to find his eldest daughter in an accident with a bleeding leg, yet she showed no signs of crying or pain.
Immediately, he took her to the hospital, where she was diagnosed with congenital insensitivity to pain. This is a rare and dangerous genetic disorder that causes individuals to endure a lifetime of suffering without the ability to feel pain. They can injure themselves without realizing it.
Abela was horrified to discover that his youngest daughter suffers from the same condition as her sister. At ages 12 and 13, both girls have to spend about three months in the hospital each year.
“When bathing, they can feel hot and cold. But if they get burned, they feel nothing. Due to recurrent infections, my eldest daughter lost the first joint of each finger. She also had to undergo surgery to amputate a toe,” he said.
Repeated knee injuries have forced both girls to move around using crutches or a wheelchair. Abela noted that while his children do not feel physical pain, they often complain about the intense “psychological pain” they endure.
Living without pain may sound like a dream come true for some, but in reality, it is a nightmare. Worldwide, scientists have documented only a few thousand cases of this disorder. The low number is partly due to the fact that many affected individuals do not survive to adulthood.
Didier Bouhassira, a doctor at the Pain Assessment and Treatment Center at Ambroise-Pare Hospital in Paris, stated: “Pain sensation plays a crucial physiological role in protecting us from environmental dangers.”
Congenital insensitivity to pain causes many to harm themselves without realizing it. (Photo: Uplash)
According to him, in the most extreme cases, infants with this syndrome may “bite off their own tongues or fingers when teething.” Others may suffer numerous accidents like burns or fractures that fail to heal because they walk on broken legs without anyone noticing.
“They need to be taught about what is natural instinct in others to protect themselves,” he said.
Without the warning of pain, dangers lurk everywhere. For example, appendicitis manifests in normal individuals through symptoms like pain and fever. However, for those with insensitivity, it can silently develop into a severe systemic infection.
“The condition can also lead to blindness. Typically, the eyes need to be kept moist, and the nervous system controls this process through the blinking reflex. Those who lack pain sensation sometimes forget they need to do this,” said Dr. Ingo Kurth from the Institute of Human Genetics in Germany.
The condition of congenital insensitivity to pain was first recognized in the 1930s. Since then, numerous studies have identified gene mutations that inhibit the ability to feel pain.
“We know that there are currently over 20 genetic factors that cause or lead to congenital insensitivity,” Dr. Kurth stated.
According to him, there is no cure for the condition. Scientists have yet to develop a treatment for it.
“However, our understanding of the causes of this disease will open new doors. Based on this knowledge, we hope to provide therapies for patients in the coming years,” he said.
The medical community also hopes that researching how congenital insensitivity to pain operates could lay the groundwork for new pain relief medications. This idea has garnered significant interest from major pharmaceutical companies seeking new products for the multi-billion-dollar pain relief industry.
