Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 In a message dated 10/15/2003 3:59:31 PM Pacific Daylight Time, liliwigg@... writes: > CMT NOT ALWAYS DIAGNOSED, RESIDENT SAYS > by Dave Reynolds > > A large number of people with a neuro-muscular disease are going > undiagnosed or misdiagnosed, a Valley resident afflicted with it claims. > Gretchen Glick, 51, of Solvang was diagnosed with Charcot-Marie-Tooth > disorder at age 9 after first experienced symptoms two years earlier. This is great Gretchen! I wish more people could see CMT information like in your article. It sure woud save a lot of kids and adults some painful testing. If you know what I mean. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 (This article was in my local newspaper yesterday. The paper is not online, so I have placed the entire article here. The interview was done back in July, lol, but hey, better late than never! It is in the " Health " section of about 4 columns where Doctors usually write things. ~ Gretchen) From the Santa Ynez Valley Extra Edition News, October 14, 2003 HEALTH CMT NOT ALWAYS DIAGNOSED, RESIDENT SAYS by Dave Reynolds A large number of people with a neuro-muscular disease are going undiagnosed or misdiagnosed, a Valley resident afflicted with it claims. Gretchen Glick, 51, of Solvang was diagnosed with Charcot-Marie-Tooth disorder at age 9 after first experienced symptoms two years earlier. CMT is a disorder that affects peripheral nerves and muscles, Glick said. The muscles of people afflicted by the disease can atrophy and nerves stop working because the muscles are damaged, she explained. While not a fatal disease by itself, CMT can affect nerves that help people breathe, which could cause someone to choke to death or develop pneumonia. In addition, CMT's effects on nerves in the legs can cause people to trip and fall, potentially causing serious injuries, Glick explained. About one out of every 2,000 people has CMT, Glick estimated, saying her figure is based on the disease's similarity Muscular Dystrophy. CMT " is not a form of Muscular Dystrophy, " she said. " We are bringing CMT out of the closet to take its own stand. " In addition to similarities with these other diseases, there are six different types of CMT and 53 subtypes, all of which can lead to misdiagnoses, Glick said. With Muscular Dystrophy, for example, a victim's muscles are damaged at birth, while with CMT, the disease can strike at any age. It can strike at birth, but has been known to afflict people much later in life, too, Glick said. The Valley resident said she hopes to raise funds to fight the incurable disease through raising awareness in the community. Some people need nothing more than shoe inserts to help them counter early effects, while others need leg braces, forearm crutches or wheelchairs, depending on their symptoms. " Right now the treatments depend on the person's individual needs, " Glick explained. For example, Glick said she receive potassium and physical therapy as a teenager to help her stretch her muscles and allow her to have a normal life. Several medical treatments show promise of helping arrest CMT's effects, though no cure has been found. Among the drugs waiting for human or clinical trials to start are Sonic Hedgehog protein and a new drug called NT-3. One of the most common problems facing CMT patients is fatigue, she said. People with CMT require twice as much energy to do half the work as someone without the disease, so the fatigue level increase, she explained. " People with CMT learn to pace themselves and take naps. " Exercise is a method of combating the disease's effects. Aquatic exercises in particular are great for people with CMT and other muscular diseases because if the person falls, they won't hurt themselves, she said. Glick combats her disease by participating in a medically supervised Aquatics program and swims in warm ocean waters when she can. Supervised walking programs and physical therapy are also helpful, she added. Valley residents wanting to learn more about CMT can reach Glick via e-mail at liliwigg@... and she can put them in touch with an international discussion group. Glick asks that people include CMT in the subject line so their messages are not inadvertently dumped. Quote Link to comment Share on other sites More sharing options...
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