An Overview of CIPA, a Rare Disorder that Keeps People from Feeling Pain

Are you a fan of Grey’s Anatomy? Do you remember the episode, “Sometimes a Fantasy,” where a young girl was brought in by her parents because she had a gaping wound across her leg, three gashes in her arm—all self-stapled but untreated—and a keloid on her forehead? The girl character, played by Abigail Breslin, couldn’t feel pain. Her “little” accidents at school produced a lot of wounds on her body, but she felt fine and thought she was a superhero.

Breslin was really cute playing the part, and she made the fictional character come alive. But her condition in the show, Congenital Insensitivity to Pain with Anhidrosis (CIPA) or congenital analgesia, is not a fantasy. It’s real. It’s one of the rare conditions that have prompted case studies among patient advocacy groups to understand what patients are going through. There are only about a hundred individuals with congenital analgesia in the world.

Learning More About CIPA

It might sound cool to be immune to pain and never have to watch out for cuts, bumps, and burns—but that’s exactly the problem. After all, the reason pain exists is, so you’d know that your body is going through a traumatic situation or action, allowing you to respond accordingly. Individuals with CIPA don’t have any stimulus to respond to.

Congenital insensitivity to pain and anhidrosis is a hereditary disease that prevents a person from feeling pain or sweating normally. It means that a person suffering from this condition likely has family members and relatives who also experience immunity to pain.

CIPA is also known in medical circles by another name: hereditary sensory and autonomic neuropathy type IV (HSAN IV), which is a more revealing label. Neuropathy means damage to the nerves that are outside of the central nervous system. Sensory neuropathy suggests that the nerves damaged are those that control sensation. Autonomic neuropathy means that the nerves damaged are the ones controlling the body’s survival functions. For CIPA patients, the affected autonomic nerves control sweating.

Alien to Pain

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The causes and symptoms of CIPA are known, but there are no cures for the disorder. Recognizing and avoiding danger is very difficult for individuals with CIPA.

As kids, CIPA patients don’t feel the usual pain other children go through when hitting their head on the edge of a table, falling and scraping their knees, or accidentally touching a candle flame. When they start teething, they sometimes over-chew things to the point of scraping their gums (without feeling it). When they rub their eyes, they could overdo it and not know if they’ve damaged their retina.

As adults, they might not feel a lot of things like hunger pangs, the need to urinate or relieve themselves, eye irritation, back, neck, and joint pain, or headaches. They might forgo eating, going to the bathroom, changing positions to ease joint pain, or overexert their body. Without the ability to sweat, they could work up a temperature while exercising and not know it. With no recognition of a cut or wound as it occurs, individuals are prone to infection and self-mutilation if they’re not on guard.

Although doctors and medical researchers have found a way to measure the level of pain patients feel through machines, not much can be done for people who don’t feel pain. CIPA patients, especially the children, need to be more careful not to be wounded or injured, or avoid situations where they could potentially be wounded, injured, or burned.

Those who suffer from this condition, as well as their families, would be well to have a support system from patient advocacy groups, medical outreach volunteers, and other CIPA patient families.

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