Plunging his hand into scalding hot coffee. Twisting a shard of glass inside his palm. High-fiving a burning stove.
Isaac Brown’s resume reads more like a professional stuntman’s than a 5-year-old’s. Isaac suffers from congenital insensitivity to pain (CIP), a condition that he and his parents have wrestled with since birth. The disorder is so rare that scientists tend not to have readily available advice for parents. What they do know, however, is that the boy who feels no pain could, in fact, save the lives of millions of chronic pain sufferers around the world.
A lot is unknown about Isaac’s condition. CIP has been reported in scientific literature not even two-dozen times. Even finding the gene that’s associated with CIP has turned into an exhausting search that, so far, has borne little fruit. Researchers at the Mayo Clinic told Isaac’s parents, Carrie and Randy Brown, that the search for the mutated gene could take up to four to eight years, if it’s ever found at all. So far, a group of related studies have narrowed down the search to specific sodium channels, but the rest is a mystery.
"A gene has many thousands of letters in it. It's like a string of beads," Dr. Stephen Waxman, director of the Center for Neuroscience and Regeneration Research at Yale University School of Medicine, told Good Morning America. "The sodium channel is a string of 2,000 beads and one of them is wrong. One gene out of 30,000."
Sodium channels were first implicated as suspects in blocking pain when scientists discovered that when nociceptors react to potentially damaging stimuli (i.e. pain), the neurons that travel through the sodium channels and up the spinal cord to the brain actually get blocked along the way. The brain doesn’t get the memo, so the person feels no pain. This is only one theory; Isaac’s condition may arise from another source, and that’s what researchers are currently working to find out.
If the problem does lie within these channels, Isaac’s condition could be exploited to treat an unlikely group of people: chronic pain sufferers.
Those at the complete other end of the spectrum, for whom daily tasks are impossible because of unbelievable and tormenting amounts of pain, may find relief in the very mutation that renders Isaac, among other things, unable to sweat, notice injuries, and of course, feel pain. Waxman says that if the correct pain medication could be produced, the benefit to pain sufferers would be astonishing.
"We could fill our clinics five times over with patients in chronic pain," he told Good Morning America.
The trick is finding a channel that doesn’t interact with other organs, such as the brain or heart, so that any treatment of the channel can’t disrupt other processes. Isolating these channels, in other words, would mean scientists could develop medication that blocks specific channels much in the same way Isaac’s channels are blocked.
A recent study published in Nature Genetics examined an unnamed girl suffering from CIP, and discovered the specific mutation that could eventually lead to producing pain medication. Currently, it’s still in the early stages. Geneticist and study co-author Dr. Ingo Kuth said the breakthrough would require careful attention, because “you might avoid [old] side effects, but create new ones” in the process.
Isaac’s mother, Carrie, said the prospect of using her son’s condition to help people is “amazing.” Even if Isaac can’t be cured, or go out in the sun because Carrie fears heat stroke, or even if he needs to be taught when to say “ow” and that “blood is bad,” science being able to turn a negative into a positive affirms Isaac as larger than his insensitivity to pain.
"When he was diagnosed, [doctors said] there's nothing we can do for Isaac, not yet anyway," Carrie recalled. "But the fact that they can take his mutated gene and cause people with chronic pain to feel less pain. The thought of that is unreal…. God gave us Isaac, maybe for this very purpose."