Patient With No Pain Gauge Could Help Chronic Pain Patients
Posted: Nov 10, 2010 8:26 AM PST
GAINESVILLE, FL - Just like your car or a bank vault, your body comes equipped with a high-end warning system. The trigger is pain and while it's a feeling no one wants, it's there to tell us something's wrong. What if that warning system was always on high alert or what if it never worked at all?
"She did not cry when she was born, the nurse even said, ‘oh what a good baby you have,'" said John Blocker, Ashlyn's father.
A good baby they said, one who grew into a precocious toddler with no fear.
"She would fall down or run into something and not even be phased by it," said John.
Soon the Blocker family realized baby Ashlyn wasn't just putting on a brave face. Their tough little girl was a little too tough.
"She was in her high chair and she literally put her pointer finger in her mouth and just ripped the skin right off. She wasn't upset. She wasn't crying," said Tara Blocker, Ashlyn's mother.
That accident led to another.
"There was just blood everywhere, she had mutilated her bottom lip to no avail," said Tara. "Just chewing it while she was asleep."
"She had touched her hand on a hot pressure washer motor and she burned the palm of her hand and all the tips of her fingers," said Tara.
Doctors finally realized Ashlyn was her own worst enemy, literally, she simply can't feel pain.
"I was not looking where I was going and then I crashed and then my ankle got broken, I just kept on going," said Ashlyn.
It's called congenital insensitivity to pain. A pair of genetic mutations short-circuited the pain signals that go to Ashlyn's brain. She's just one of 20 documented cases in the U.S. Only 40 exist in the entire world.
"My mom just tells me I'm very, very special," said Ashlyn.
"We can really learn from individuals like this child, what it really means to be at the opposite end of feeling essentially no pain," said Roland Staud, M.D., a Professor of Medicine at the University of Florida.
Ashlyn is helping researchers study pain like never before. They want to know if there's a master switch for pain and how to turn it on and off. Does a lack of pain impact emotions, and can that person still show compassion towards others? But most importantly, this little girl may hold the key for the nation's 70 million chronic pain patients.
"If they could just have one molecule like Ashlyn has, they would have the perfect pain killer, and I'm thinking that's pretty wow," said Tara.
That pain killer may save someone like Robert Hinton.
"The extreme pain I get is like someone just dousing my body with gasoline and just constantly lighting a match. There are days where my spinal cord feels like someone's pulling it out of my body with tweezers," said chornic pain patient Robert.
A car crash led to a nerve injury which led to the diagnosis of reflex sympathetic dystrophy. That's a chronic neurological syndrome that causes constant burning in the hands and legs.
"I swallowed 35 pills in one night and I said a prayer, I said ‘God I want to go to heaven because I can't take this pain anymore,'" said Robert.
Robert survived that and survives now by mostly grinning-and-bearing it, as treatment is limited. He does get powerful infusions of pain meds but those put him into a coma for days. Doctors said after this kind of pain has been present for six months, it becomes irreversible. Patients may also suffer muscle atrophy, loss of mobility and contorted limbs.
"I've gone through having more than 100 epidurals and nerve blocks just to get the pain where it's tolerable," said Robert.
A man whose pain won't stop and a girl who can't even begin to feel pain at all.
"We want Ashlyn to have the best life possible and we're going to do everything under our power to ensure that. We're blessed to have her, there's a reason for her," said Tara.
Doctors have identified Ashlyn's gene mutation and may be able to tweak it using a form of gene therapy, but it's unclear if they would be able to create the right balance. Ashlyn's parents said they would never put her through the process.
RESEARCH SUMMARY:
ALL PAIN . . . NO GAIN: Bonica's Management of Pain, 3rd Edition states that, "chronic pain has several different meanings in medicine." It continues by adding that the distinction between acute and chronic pain traditionally has relied upon an arbitrary interval of time from onset; the two most commonly used markers being 3 months and 6 months since the initiation of pain, though some theorists and researchers have placed the transition from acute to chronic pain at 12 months. According to Pain Management: A Disciplinary Approach, others apply acute to pain that lasts less than 30 days, chronic to pain of more than six months duration, and subacute to pain that lasts from one to six months. A popular alternative definition of chronic pain, involving no arbitrarily fixed durations is "pain that extends beyond the expected period of healing."
STICKS AND STONES MAY BREAK MY BONES, BUT I DON'T FEEL A THING: When most of us are hurt, the body sounds an alarm . . . but that feeling is foreign to Ashlyn, Blocker who suffers from what's called congenital insensitivity to pain with anhidrosis, also known as CIPA, a rare genetic disorder affecting the nerve endings. She has no sense of extreme temperatures, and she can't feel pain -- though she can feel some non-painful sensations. At least 100 people worldwide are known to have CIPA and repeatedly suffer severe injuries, burns, cuts and fractures. Family photos of Ashlyn reveal a swollen lip occurring after she mistakenly bit it, and a burned hand stemming from an appliance she did not know was extremely hot. On several occasions she's also knocked out teeth, which in the long run may have been a kind of blessing in disguise.
AN AVERAGE DAY FOR A NOT SO AVERAGE GIRL: At school, precautions are in place to keep Ashlyn injury free. Since the same condition makes her unable to sense outside temperature, she can't sweat. Therefore, there's always a cold bottle of water nearby. After recess, Ashlyn reports to the nurse's office, where ABC News reported they found the nurse looking for sand in her eyes. Her body got inspected from head to toe, and rid of residual sand that could have caused painful abrasions she wouldn't feel. In a handful of cases, CIPA has proven fatal, because those afflicted are unable to feel symptoms of fever or life-threatening infections like appendicitis. However, every case is different. So for Ashlyn, sadly, there's no telling what the future holds.
FOR MORE INFORMATION, CONTACT:University of Florida Department of Medicine
Gainesville, FL
Phone : 352-392-3261
"She did not cry when she was born, the nurse even said, ‘oh what a good baby you have,'" said John Blocker, Ashlyn's father.
A good baby they said, one who grew into a precocious toddler with no fear.
"She would fall down or run into something and not even be phased by it," said John.
Soon the Blocker family realized baby Ashlyn wasn't just putting on a brave face. Their tough little girl was a little too tough.
"She was in her high chair and she literally put her pointer finger in her mouth and just ripped the skin right off. She wasn't upset. She wasn't crying," said Tara Blocker, Ashlyn's mother.
That accident led to another.
"There was just blood everywhere, she had mutilated her bottom lip to no avail," said Tara. "Just chewing it while she was asleep."
"She had touched her hand on a hot pressure washer motor and she burned the palm of her hand and all the tips of her fingers," said Tara.
Doctors finally realized Ashlyn was her own worst enemy, literally, she simply can't feel pain.
"I was not looking where I was going and then I crashed and then my ankle got broken, I just kept on going," said Ashlyn.
It's called congenital insensitivity to pain. A pair of genetic mutations short-circuited the pain signals that go to Ashlyn's brain. She's just one of 20 documented cases in the U.S. Only 40 exist in the entire world.
"My mom just tells me I'm very, very special," said Ashlyn.
"We can really learn from individuals like this child, what it really means to be at the opposite end of feeling essentially no pain," said Roland Staud, M.D., a Professor of Medicine at the University of Florida.
Ashlyn is helping researchers study pain like never before. They want to know if there's a master switch for pain and how to turn it on and off. Does a lack of pain impact emotions, and can that person still show compassion towards others? But most importantly, this little girl may hold the key for the nation's 70 million chronic pain patients.
"If they could just have one molecule like Ashlyn has, they would have the perfect pain killer, and I'm thinking that's pretty wow," said Tara.
That pain killer may save someone like Robert Hinton.
"The extreme pain I get is like someone just dousing my body with gasoline and just constantly lighting a match. There are days where my spinal cord feels like someone's pulling it out of my body with tweezers," said chornic pain patient Robert.
A car crash led to a nerve injury which led to the diagnosis of reflex sympathetic dystrophy. That's a chronic neurological syndrome that causes constant burning in the hands and legs.
"I swallowed 35 pills in one night and I said a prayer, I said ‘God I want to go to heaven because I can't take this pain anymore,'" said Robert.
Robert survived that and survives now by mostly grinning-and-bearing it, as treatment is limited. He does get powerful infusions of pain meds but those put him into a coma for days. Doctors said after this kind of pain has been present for six months, it becomes irreversible. Patients may also suffer muscle atrophy, loss of mobility and contorted limbs.
"I've gone through having more than 100 epidurals and nerve blocks just to get the pain where it's tolerable," said Robert.
A man whose pain won't stop and a girl who can't even begin to feel pain at all.
"We want Ashlyn to have the best life possible and we're going to do everything under our power to ensure that. We're blessed to have her, there's a reason for her," said Tara.
Doctors have identified Ashlyn's gene mutation and may be able to tweak it using a form of gene therapy, but it's unclear if they would be able to create the right balance. Ashlyn's parents said they would never put her through the process.
RESEARCH SUMMARY:
ALL PAIN . . . NO GAIN: Bonica's Management of Pain, 3rd Edition states that, "chronic pain has several different meanings in medicine." It continues by adding that the distinction between acute and chronic pain traditionally has relied upon an arbitrary interval of time from onset; the two most commonly used markers being 3 months and 6 months since the initiation of pain, though some theorists and researchers have placed the transition from acute to chronic pain at 12 months. According to Pain Management: A Disciplinary Approach, others apply acute to pain that lasts less than 30 days, chronic to pain of more than six months duration, and subacute to pain that lasts from one to six months. A popular alternative definition of chronic pain, involving no arbitrarily fixed durations is "pain that extends beyond the expected period of healing."
STICKS AND STONES MAY BREAK MY BONES, BUT I DON'T FEEL A THING: When most of us are hurt, the body sounds an alarm . . . but that feeling is foreign to Ashlyn, Blocker who suffers from what's called congenital insensitivity to pain with anhidrosis, also known as CIPA, a rare genetic disorder affecting the nerve endings. She has no sense of extreme temperatures, and she can't feel pain -- though she can feel some non-painful sensations. At least 100 people worldwide are known to have CIPA and repeatedly suffer severe injuries, burns, cuts and fractures. Family photos of Ashlyn reveal a swollen lip occurring after she mistakenly bit it, and a burned hand stemming from an appliance she did not know was extremely hot. On several occasions she's also knocked out teeth, which in the long run may have been a kind of blessing in disguise.
AN AVERAGE DAY FOR A NOT SO AVERAGE GIRL: At school, precautions are in place to keep Ashlyn injury free. Since the same condition makes her unable to sense outside temperature, she can't sweat. Therefore, there's always a cold bottle of water nearby. After recess, Ashlyn reports to the nurse's office, where ABC News reported they found the nurse looking for sand in her eyes. Her body got inspected from head to toe, and rid of residual sand that could have caused painful abrasions she wouldn't feel. In a handful of cases, CIPA has proven fatal, because those afflicted are unable to feel symptoms of fever or life-threatening infections like appendicitis. However, every case is different. So for Ashlyn, sadly, there's no telling what the future holds.
FOR MORE INFORMATION, CONTACT:University of Florida Department of Medicine
Gainesville, FL
Phone : 352-392-3261
0 comments:
Post a Comment