Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Amy, Very, very cool. We are proud of you, Chance and Cathy! Ruth >From: amy913@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Article on Chance >Date: Wed, 22 Mar 2000 20:49:36 -0600 (CST) > >From: amy913@... > >Here is the article on Chance. It also accompanied a big picture of him >talking to the doctor......... > >Slowed, Not Stopped >Portage boy battles rare nerve disorder >by Amy Lavalley >staff writer >Chance Culp-Rigg can tell you all about the nerve disorder he lives >with. >Talking a mile a minute and bouncing around his mom's Portage living >room, the blonde 6-year-old with blue eyes seems like a normal kid. >And he is, except for Charcot-Marie-Tooth disease, a progressive >disorder that already is starting to rob Chance of his motor skills. > " The first day I noticed my CMT was bad. I couldnt walk. It was almost >like someone chopped my feet off, " said Chance, a kindergartner at >Crismon Elemetary School in Portage. >Doctors estimate one in 2,500 people hae CMT, which is inherited. That >makes it one of the most common degenerative nerve diseases, though many >people do not know they have it, said Dr. Daksha Vyas, a neurologist who >practices in Merrillville and . > " It's possible some people may put up with the symptoms and may not even >see a doctor, " Vyas said. She recently saw Chance and has treated >several other patients with the disease. >Symptoms include foot and hand deformities, numbness, weakness and pain >in the extremities, and a progressive loss of motor skills and muscle >strengh. > " You lose normal use of the feet, legs, hands and arms as the nerves to >the extremities slowly degenerate, " Vyas said. >Though CMT sometimes affects breathing ability, it is not typically >fatal and does not shorten life spans. >There is no treatment for the disease, other than physical therapy, leg >braces and, sometimes, corrective surgery. >Doctors diagnosed Chance's grandmother with CMT about six years ago, >after she had back problems because of a fall. >Chance's mother, Amy Culp, also has symptoms of the disease, including >curvature of the spine, though she has not been diagnosed. >Culp said doctors diagnosed her son with the disease through blood tests >almost two years ago, after he had a seizure. The seizure was not >related to the CMT. >Chance's symptoms became more noticeable in recent weeks. About a month >ago, his legs hurt so much he could not walk. >He cannot run or walk as fast as his friends, his mom said, and he has >trouble writing, tying his shoes and with other fine motor skills, as is >typical in people with CMT. Culp worries about other kids teasing Chance >because he cannot always keep up with them at school. >Though his condition will continue to worsen, Vyas said CMT progresses >at different rates in each patient. The progression of the disease >varies from patient to patient, so there is no way to predict how >severely it will limit Chance's mobility. >CMT will not, hoever, affect Chance's intellect. > " Mentally, he should be pretty capable of doing whatever he wants to, " >Vyas said. >---------------------------------------------- >ABOUT CMT DISEASE >-Charcot-Marie-Tooth disease was discovered in 1886 by three physicians, >Jean-Marie Charcot, Pierre Mare, and Henry Tooth. -It affects >approximately 150,000 Americans..... -A high-arched foot is one of the >first signs of the disorder. -The loss os nerve function in the >extremities also leads to sensory loss. The ability to distinguish hot >and cold is diminished, as well as the sense of touch. >Source: Charcot-Marie-Tooth Association home page, >www.charcot-marie-tooth.org ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Amy, Very, very cool. We are proud of you, Chance and Cathy! Ruth >From: amy913@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Article on Chance >Date: Wed, 22 Mar 2000 20:49:36 -0600 (CST) > >From: amy913@... > >Here is the article on Chance. It also accompanied a big picture of him >talking to the doctor......... > >Slowed, Not Stopped >Portage boy battles rare nerve disorder >by Amy Lavalley >staff writer >Chance Culp-Rigg can tell you all about the nerve disorder he lives >with. >Talking a mile a minute and bouncing around his mom's Portage living >room, the blonde 6-year-old with blue eyes seems like a normal kid. >And he is, except for Charcot-Marie-Tooth disease, a progressive >disorder that already is starting to rob Chance of his motor skills. > " The first day I noticed my CMT was bad. I couldnt walk. It was almost >like someone chopped my feet off, " said Chance, a kindergartner at >Crismon Elemetary School in Portage. >Doctors estimate one in 2,500 people hae CMT, which is inherited. That >makes it one of the most common degenerative nerve diseases, though many >people do not know they have it, said Dr. Daksha Vyas, a neurologist who >practices in Merrillville and . > " It's possible some people may put up with the symptoms and may not even >see a doctor, " Vyas said. She recently saw Chance and has treated >several other patients with the disease. >Symptoms include foot and hand deformities, numbness, weakness and pain >in the extremities, and a progressive loss of motor skills and muscle >strengh. > " You lose normal use of the feet, legs, hands and arms as the nerves to >the extremities slowly degenerate, " Vyas said. >Though CMT sometimes affects breathing ability, it is not typically >fatal and does not shorten life spans. >There is no treatment for the disease, other than physical therapy, leg >braces and, sometimes, corrective surgery. >Doctors diagnosed Chance's grandmother with CMT about six years ago, >after she had back problems because of a fall. >Chance's mother, Amy Culp, also has symptoms of the disease, including >curvature of the spine, though she has not been diagnosed. >Culp said doctors diagnosed her son with the disease through blood tests >almost two years ago, after he had a seizure. The seizure was not >related to the CMT. >Chance's symptoms became more noticeable in recent weeks. About a month >ago, his legs hurt so much he could not walk. >He cannot run or walk as fast as his friends, his mom said, and he has >trouble writing, tying his shoes and with other fine motor skills, as is >typical in people with CMT. Culp worries about other kids teasing Chance >because he cannot always keep up with them at school. >Though his condition will continue to worsen, Vyas said CMT progresses >at different rates in each patient. The progression of the disease >varies from patient to patient, so there is no way to predict how >severely it will limit Chance's mobility. >CMT will not, hoever, affect Chance's intellect. > " Mentally, he should be pretty capable of doing whatever he wants to, " >Vyas said. >---------------------------------------------- >ABOUT CMT DISEASE >-Charcot-Marie-Tooth disease was discovered in 1886 by three physicians, >Jean-Marie Charcot, Pierre Mare, and Henry Tooth. -It affects >approximately 150,000 Americans..... -A high-arched foot is one of the >first signs of the disorder. -The loss os nerve function in the >extremities also leads to sensory loss. The ability to distinguish hot >and cold is diminished, as well as the sense of touch. >Source: Charcot-Marie-Tooth Association home page, >www.charcot-marie-tooth.org ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Amy, Very, very cool. We are proud of you, Chance and Cathy! Ruth >From: amy913@... >Reply-To: CMTUS (AT) onelist (DOT) com >To: CMTUS (AT) onelist (DOT) com >Subject: Article on Chance >Date: Wed, 22 Mar 2000 20:49:36 -0600 (CST) > >From: amy913@... > >Here is the article on Chance. It also accompanied a big picture of him >talking to the doctor......... > >Slowed, Not Stopped >Portage boy battles rare nerve disorder >by Amy Lavalley >staff writer >Chance Culp-Rigg can tell you all about the nerve disorder he lives >with. >Talking a mile a minute and bouncing around his mom's Portage living >room, the blonde 6-year-old with blue eyes seems like a normal kid. >And he is, except for Charcot-Marie-Tooth disease, a progressive >disorder that already is starting to rob Chance of his motor skills. > " The first day I noticed my CMT was bad. I couldnt walk. It was almost >like someone chopped my feet off, " said Chance, a kindergartner at >Crismon Elemetary School in Portage. >Doctors estimate one in 2,500 people hae CMT, which is inherited. That >makes it one of the most common degenerative nerve diseases, though many >people do not know they have it, said Dr. Daksha Vyas, a neurologist who >practices in Merrillville and . > " It's possible some people may put up with the symptoms and may not even >see a doctor, " Vyas said. She recently saw Chance and has treated >several other patients with the disease. >Symptoms include foot and hand deformities, numbness, weakness and pain >in the extremities, and a progressive loss of motor skills and muscle >strengh. > " You lose normal use of the feet, legs, hands and arms as the nerves to >the extremities slowly degenerate, " Vyas said. >Though CMT sometimes affects breathing ability, it is not typically >fatal and does not shorten life spans. >There is no treatment for the disease, other than physical therapy, leg >braces and, sometimes, corrective surgery. >Doctors diagnosed Chance's grandmother with CMT about six years ago, >after she had back problems because of a fall. >Chance's mother, Amy Culp, also has symptoms of the disease, including >curvature of the spine, though she has not been diagnosed. >Culp said doctors diagnosed her son with the disease through blood tests >almost two years ago, after he had a seizure. The seizure was not >related to the CMT. >Chance's symptoms became more noticeable in recent weeks. About a month >ago, his legs hurt so much he could not walk. >He cannot run or walk as fast as his friends, his mom said, and he has >trouble writing, tying his shoes and with other fine motor skills, as is >typical in people with CMT. Culp worries about other kids teasing Chance >because he cannot always keep up with them at school. >Though his condition will continue to worsen, Vyas said CMT progresses >at different rates in each patient. The progression of the disease >varies from patient to patient, so there is no way to predict how >severely it will limit Chance's mobility. >CMT will not, hoever, affect Chance's intellect. > " Mentally, he should be pretty capable of doing whatever he wants to, " >Vyas said. >---------------------------------------------- >ABOUT CMT DISEASE >-Charcot-Marie-Tooth disease was discovered in 1886 by three physicians, >Jean-Marie Charcot, Pierre Mare, and Henry Tooth. -It affects >approximately 150,000 Americans..... -A high-arched foot is one of the >first signs of the disorder. -The loss os nerve function in the >extremities also leads to sensory loss. The ability to distinguish hot >and cold is diminished, as well as the sense of touch. >Source: Charcot-Marie-Tooth Association home page, >www.charcot-marie-tooth.org ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Terrific story, Amy. It certainly covered CMT and how Chance is affected by it. Thanks for typing it up for us. You are a trooper. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 I am printing this out for school to read . Thank you so much Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 What a great article, thanks for sharing it! Maybe I would try to do the same thing one day when we feel ready. Many regards from Rose in Sweden Quote Link to comment Share on other sites More sharing options...
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