Many people were spiritually enlightened in 1993 by the bestselling book Pain: The Gift Nobody Wants by Dr. Paul Brand and Philip Yancey. Later editions were re-titled The Gift of Pain. Dr. Paul Brand, who passed away in 2003, was a pioneer in developing medical techniques to help those suffering with leprosy. He was one of the first physicians to assert that lepers suffered not because of tissue atrophy, but the loss of the sensation of pain made lepers vulnerable to numerous injuries. The Gift of Pain probes the mystery of pain and why it should be viewed as God’s gift. The rare medical condition, subsequently named “Congenital Insensitivity to Pain”, was the focus of a feature in a recent issue of The New York Times Magazine.
Ashylin Blocker is a typical 13 year-old living with her family in Patterson, Georgia. What makes her unique is her extremely rare congenital disorder. She can feel some warm and cool objects, but not the extreme heat or cold that would cause the average person to react in pain. She can feel pressure like a hug and a handshake.
She didn’t cry at birth and at 3 months her mother discovered a severe diaper rash that had gotten raw and deeply bruised over days because Ashylin never felt it and cried.
When Ashylin was 2 she put her hands on the muffler of a running pressure-washer and burnt the flesh off her palms, feeling no pain. Another time in her back yard dozens of fire ants crawled over her and bit her over a hundred times as she delighted in seeing the bugs. When her father accidentally hammered a nail into his thumb, Ashylin didn’t understand why he hopped and yelped around.
Today she’s not allowed to roller skate or ride a bike. She tries to lead a fairly normal life except for the endless daily precautions.
Dr. Ronald Staud, professor of medicine at the University of Florida, has been researching chronic pain conditions for 15 years. He conducted numerous genetic tests on Ashylin hoping to find clues for a cure. Two distinct and extremely rare mutations were found in one of her genes that were the cause of her condition. Mutations in two other genes have been found in tests on other children with the same condition. Presently there is no remedy in sight.
Dr. Staud says of Ashylin: “Her life story offers an amazing snapshot of how complicated a life can get without the guidance of pain. Pain is a gift, and she doesn’t have it.”
A boy in Pakistan with the same condition jumped off the first floor of his house and felt fine. The next day he died from a hemorrhage caused by the jump. Other children with the condition develop numerous bodily injuries including biting their lips, hands, and the tongue. Some parents have initially been suspected of child abuse.
Karen and Ruth Cann are sisters (not twins) who live in Scotland and have learned successfully to cope with their genetic condition right into adulthood, earning university degrees and marrying. At the age of 31 Karen had her first child by an emergency C-section, bearing a healthy baby girl. Karen went home and felt a strange stiffness, but no pain, in her side for several weeks. Soon she had trouble walking and could hear a clicking sound from inside her body. An X-ray revealed her pelvis had fractured during childbirth and she had been bleeding internally ever since. She spent 6 months in the hospital and by the time her pelvis healed, her left leg was shorter than her right. Soon she had a second child by C-section but without any complications.
Justin Heckert, “The Hazards of Growing Up Painlessly”, The New York Times Magazine, November 18, 2012
Photo: musicormoney.blogspot.com CC
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