Have you ever dreamed about a superpower? To have wings and fly like a bird or become invisible and pass through walls? Maybe you have a dream to never feel pain? If so, I have good news for you! It’s possible! People who never feel pain really exist! But the question is is it a gift or a scourge?

Superheroes. Pain

 

Steven Pete. Acheless

Steven Pete has no idea how ordinary people feel. He has never felt pain. Steven was born with a rare neurological condition which is called congenital insensitivity to pain. It’s hard to imagine, but he can’t feel anything even when he has serious injuries like breaking a leg. When Pete is asked, how many bones he has broken, he just laughs. “Oh gosh. I haven’t actually done the count yet,” – Steven says. “But somewhere probably around 70 or 80.”

Steven usually finds out that he got injured from doctors. Even if these traumas are life-threaten. “We had thick snow, and we went inner-tubing down a hill. Well, I did a scorpion, where you take a running start and jump on the tube. You’re supposed to land on your stomach, but I hit it at the wrong angle. I face-planted on the hill, and my back legs just went straight up over my head,” – he reminisces.

Pete didn’t feel pain and during next 8 month he behaved usually. But then he notices something strange in his movements. So, he visited a doctor and the verdict was: “You’ve got three fractured vertebrae”. Steven has broken his back.

Now Pete can’t imagine his life feeling pain. “There’s no way I could live a normal life right now if I could actually feel pain,” – he says. Steven’s wife, Jessica, doesn’t share the positive attitude: “I worry about him all the time.” She worries about her husband, because she knows that something really terrible can happen. “If he has a heart attack, he won’t be able to feel it,” – Jessica shares. “He thinks it’s funny. I don’t.”

Steven Pete: Painless

 

Pam Costa. Painful

Her name is Pam Costa and she is absolute Steve’s opposite. At first sight, she can seem absolutely ordinary. But if you look closer at her limbs, you’ll see that they have deep plum color. You may think it’s the result of sunburning, but it’s not so. Everywhere where is plum, there is pain.

Pam was born with a rare neurological condition called erythromelalgia, otherwise known as man on fire syndrome. It means that everything that touches her body is a constant pain source. Because the inflammation is exacerbated by physical contact, stress, and even the smallest elevation in surrounding temperature, Costa has to be careful every single minute of her life. “Have you ever been out in the bitter, bitter cold, where your feet were ice?” she asks me. “Almost frostbite? Then you warm them up and it burns? That burning sensation. That is what it feels like all the time.”

50 milligram of morphine is what starts Pam’s every day. And not only it. “I pop a lot of these,” – she says, showing a handful of pills, that she has to take. The instruction says not to exceed 3 pills a day. This dose has already been taken in the morning and Pam isn’t going to stop. Otherwise the pain will become unbearable.

Pam Costa. Painful

 

Different as ice and fire

Steven and Pam don’t know each other. They got used to their lives and can’t imagine that it’s possible to have normal life. Sadly, scientists also haven’t found a key to this genetic problem. In theory, combining Pete’s and Costa’s gens can help to find a cure for innumerable diseases, but now there is no way to do this in practice.

According to the National Institutes of Health, more than one in 10 American adults say that some part of their body hurts some or all of the time. Just ponder over these figures! It’s more than 25 million people only in America. The tendency is getting worse. More and more people suffer from chronic pain.

It also means that these people resort to pills to pacify the pain. Nearly 2 million American citizens say that painkillers for them are addiction. This addiction leads to catastrophic consequences. For instance, in 2015 more than 33 thousand people died from opioid overdose. These people knew that cure abuse could lead to irreversible consequences, but the pain was intolerable.

 

Pain origin

Why do we feel a pain? The answer is very simple: to protect ourselves. If your brain registers pain, you typically stop doing what caused it. In evolutionary terms pain was a signal, which told us to stop what we were doing or to take alternative action. Because of the danger involved in it the pain signal had to be strong and hard to ignore. The pain signal is closely linked to what is known as the ‘Flight or Fight Syndrome’. This is where our body is put into ‘ALARM’ status. Our muscles receive more blood flow and oxygen, our heart beats faster, our breathing quickens and we get ready to stand and fight or run from danger.

Pain origin: Scheme

 

Chronic pain differs from ordinary pain. With chronic pain, signals of pain remain active in the nervous system for months or even years. This can take both a physical and emotional toll on a person. Chronic pain may originate with an initial trauma or infection, or there may be an ongoing cause of pain. Some people suffer chronic pain in the absence of any past injury or evidence of body damage. However, some chronic pain never even traces back to a coherent cause, which makes it that much harder to understand and stop.

 

When she was a child…

Pam’s first memories of feeling pain relate to her childhood. She was searching for a cool places to relief her ache. She even sneaked off to water fountains to wipe down her limbs with cold water. Then doctors didn’t have an idea what was happening with Pam. Some adults said that she just fibbed. Costa’s limbs’ color was the only way to persuade people something really bad was happening.

When Pam was 11, she got a letter from the Mayo Clinic, in which they invited Costa and her family to be diagnosed. Doctors found out that 29 members of Pam’s family had the same symptoms, which refers to the disease called ‘man on fire’. This verdict didn’t help to clear up situation or find a treatment.

“I had my tubes tied right after my 18th birthday,” – Pam shares. “Always, since I was a little girl, I wanted to be a mother more than anything in the world.” When dating, she’d tell her companion that she couldn’t have biological children. “That was a deal breaker for many guys,” she says. Fortunately, she got married a man, who loves Costa, despite the disease. Moreover, in 2000 they adopted a daughter.

Pam hadn’t known anything about her illness till 2004. Then scientists from Beijing lab found genes that turned into a single gene, SCN9A, a.k.a. erythromelalgia. It was the first evidence of a specific genetic cause of man on fire. For people like Pam it was the only sign of hope.

When he was a child…

Steven’s parents noticed that something wrong was happening with their child, when he was 6 months old. Pete started teething. He chewed off part of his tongue. When he got older he bang his head against walls, not even stopping when it became swollen or indented. His parents made him wear a helmet, and they wrapped his arms and legs in long socks, securing them with duct tape to prevent him from chewing away at his own limbs.

His younger brother, Chris, was almost in the same situation. He had many of the same symptoms and all the same fearlessness. A day rarely passed when one of them didn’t bleed or bruise.

As with Pam, doctors couldn’t find explanation for Pete’s painlessness. The pediatrician hadn’t heard of a condition that prevented someone from feeling pain, but after weeks of research, he found over 40 similar cases. Steven was diagnosed with congenital insensitivity to pain.

Pete went on to live an ordinary life. In 2003, Pete met his future wife, Jessica. “We talked on the phone for hours,” – Jessica remembers. Pete told her about his painlessness, and at the time she didn’t think much of it. “I guess I was like, ‘That’s pretty cool,’ ” – she says now with a shrug. They married in 2005.

 

Two sides of the genetic coin

Sometimes Costa dives into memories about her pain. Some of them are funny, but mostly sad. Neurologists say that pain activates memory-making processes. For instance, you don’t remember every time you were skating, but you remember the day when you fell and broke you knee. Pain is something that our brain keeps. This echo of pain constantly prevents us from repeating the same mistakes and hurting ourselves. We don’t touch hot surfaces like kettle or iron, because this touch will hurt us.

Pete reluctantly remembers details about his childhood. It also hurts him, but in another way. His brother, Chris, had the same painless as Steven. This countless injures damaged Chris’ body so much that doctor predicted he would be in a wheelchair before he turned 30. These words were unbearable for Chris. He ended up hanging himself in the barn on their parents’ property. Steven was shocked: “It felt like losing … my life.” Even now, when eight years have passed after Chris death, it’s hard for Steven to talk about it. He just hopes that one day doctors will find a way to cure painlessness.

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