'The last time I broke a bone, my wife noticed before I did': One of two brothers born with a rare genetic disorder shares his agony over not being able to feel painSteven Pete believes that suffering from congenital
analgesia was why his brother Christopher chose to
take his own lifeCongenital
analgesia is a genetic disorder that affects less than one in one million people
18:24 GMT, 19 July 2012
One of two brothers who were born with a rare genetic disorder, has told how they grew up without ever feeling pain.
Steven Pete, 31, from Washington said although he and his late brother, Christopher, had a sense of touch, they had no pain receptors and at five months old, Steven had chewed off a quarter of his tongue while teething.
His parents took the babies to a pediatrician where they underwent a series of tests. Steven told BBC: 'At first they put a cigarette lighter underneath my foot and waited for my skin to blister… Then they began running needles up and down my spine. I had no response to either.'
Suffering with no pain: Steven Pete, 31, said although he and his late brother, Christopher, had a sense of touch, they had no pain receptors
The brothers grew up on a farm, where his protective parents struggled with a balance of giving them enough freedom while also watching their every move.
Steven, who was frequently absent from school because of injury and illness, and also usually in a cast, said:
'When you're out in the country, especially if you're a boy, you're
going to go out and explore and get in a little mischief.
Grown up: Steven (pictured), believes having to live with congenital analgesia was why his brother chose to take his own life
'There was one time, at the roller-skating rink. I can't recall all of the details, but I know that I broke my leg. People were pointing at me because my pants were just covered in blood from where the bone came out. After that, I wasn't allowed to roller skate until I was much older.'
Having to live with congenital
analgesia, feeling no physical pain, might appear to some to be a
strange gift, however Steven believes it was why his brother chose to
take his own life.
Steven said: 'His back was getting progressively worse. He was pretty close to
graduating from a local college and the doctors told him that probably
in the next year, year-and-a-half, he would be in a wheelchair.'
recalls how at five or six years old, he was taken away from his
parents by child protective services after someone reported them for
child abuse. Eventually, while the state's care for approximately two
months, he broke his leg.
He said: 'They finally realised that my parents and the pediatrician were telling the truth about my condition.'
He also recalls how he was involved
in a lot of fights during school. When a new student arrived at his
school, the other children would egg that person on to pick a fight with
Steven, as an introduction to the school.
'They would say: “If you can't feel pain, you will once I'm done with you,” he remembers.
He admits that he fears internal injuries the most, especially appendicitis.
Hospital visits: Steven, who was frequently absent from school because of injury and illness, and also usually in a cast, is pictured with his brother
'Usually whenever I have any type of stomach issues or a fever I go to the hospital just to get it checked out,' he said.
last time I had a broken bone, my wife actually noticed before I did.
My foot was swollen, black and blue, so I went to the doctor and had an
X-ray and they told me that I had broken two of my toes and they wanted
to put a cast on it.'
WHAT IS CONGENTIAL ANALGESIASufferers feel no pain, and hot and cold don't register as dangerous sensationsGenetic disorder that affects less than one in a million peopleYoung sufferers may chew on fingers and tongue, or burn handsSome parents use goggles, helmets and long socks on hands to protect childrenCan cause arthritis and growth defectsNo known cause, treatment or cure
He continued: 'I had to go to work the next day. If had a cast on I wasn't going to be able to work for quite some time so I just told them I'd take care of myself. I went home and took some duct tape, taped it up, put my boots on and went to work that next morning.'
He says that one thing he will soon have to face is the fact that he will eventually lose his left leg.
'I've had quite a bit of surgery on my left knee in the past and it's got to the point where my doctors have told me to wait until it gives out completely. Once that occurs they're just going to have to amputate.
'I really try not to think about it. I try not to let it get to me,' he said.