Rare disease info
I was recently told I have a rare disease, Charcot-Marie-Tooth (named after the physicians that discovered it, and usually referred to as simply CMT).
Some rare diseases, such as Lou Gehrig's disease, are well known to the public. Others, like CMT, are not and have no effective treatment or cure, and for which medical research is seriously underfunded.
According to the CMT Association, CMT is the most commonly inherited peripheral neuropathy (look that up on Yahoo), with symptoms ranging from moderately incapacitating to severely disabling. Yet many people have never heard of it and many medical professionals have little or no experience diagnosing or managing it.
I'm lucky to have a physician who understands CMT and that -- right now anyway -- it's still in the moderate range.
The CMT Association, a national organization devoted to educating patients and physicians about CMT and funding research to find treatments and a cure, has just implemented an accelerated research initiative that has the potential of finding effective treatments for the most common forms of CMT (there are 20-some) within three to five years. Your donations, I'm sure, will be appreciated.
To learn more about the CMTA, please visit www.charcot-marie-tooth.org.
DAVID R. CROUNSE
Tehachapi
