SEASIDE - A week dedicated to one of the most commonly inherited peripheral neuropathies in the world, Charcot-Marie-Tooth disease, is planned for Sept. 19-26. The Charcot-Marie-Tooth Association (CMTA) hopes an annual event will help raise awareness and increase knowledge about the disease.
Mary Kay Taylor of Seaside is one of five family members who all inherited CMT type 1A, and is starting a support group. "My sister Sarah, and others, have passed away from CMT," Taylor said, "but yet seldom are the health care and public informed that CMT can be fatal. So like my sister, many people don't get the help they need." Taylor is also a member of a global support network for persons with CMT, CMTUS (www.cmtushope.info).
An estimated 6 million worldwide have the progressive disorder, which causes faulty nerve cell transmission leading the muscles in the extremities to slowly atrophy, resulting in the loss of normal use of feet/legs/hand/arms. It may also lead to a loss of sensory functions, orthopedic deformities and weakness of the respiratory muscles that can cause life-threatening problems.
"CMT symptoms can appear at any age and is found in both genders, as well as all ethnicities, yet is sometimes is overlooked and not routinely diagnosed," Taylor said.
To date, more than 40 specific genes known to cause the disorder have been identified. The genetic mutations can now be replicated in the laboratory models and grown as tissue cultures. Spearheaded by an international collaboration of researchers, the Strategy to Accelerate Research Initiative initially involves three projects and focuses on the most common form of CMT, type 1A.
For information, go to (www.cmtausa.org) or call (800) 606-2682. For information on a CMT support group, e-mail (email@example.com) or call (503) 738-8223. For brochures, stop by Omega Realty, 1700 N. Holladay Drive in Seaside from 2 to 4 p.m. Sept. 23.