Hope

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Hope for People With Charcot Marie Tooth Disorder

People with Charcot Marie Tooth disorder learn hope through positive,

upbeat, educational and experiential discussions at , now in its

6th year as the leader in CMT patient networks. With a global membership

that spans 29 countries, members share positive living strategies

and resources while following new research/treatment paradigms closely.

1,027 members with CMT currently network via this email service and

connect with others to learn more about the 44 types of Charcot Marie

Tooth as well as the idiosyncrasies of symptoms.

(Charcot Marie Tooth Universal Services) began in 1999 because of

a lack of positive information exchange about the disorder and has

blossomed into a place where many with CMT come to find how to develop a

positive quality of life. members provide hope, affirmation,

encouragement, inspiration, empowerment, and practical suggestions for

each other. Information gathered from the medical profession is shared,

but MOST IMPORTANTLY members share personal discoveries and insights

that gained from living with CMT. The hopeful slogan " Can Manage This "

has been adopted by persons as a positive and creative use of the

acronym, CMT.

Charcot-Marie-Tooth disorder is a collection of multiple neurological

diseases, each caused by different genetic mutations which affect the

peripheral nerves slowly causing muscle atrophy. Surrounding insulation

of the nerve is included, as the nerve is all axon and myelin. CMT was

named after three doctors who simultaneously discovered and named it in

late 19th century Europe; Jean- Charcot, Pierre Marie and

Henry Tooth. Their surnames are represented in the disease name and

often confuse the general public because it does not reflect or explain

the nature of the disease itself.

About 1 in 2,500 persons have one of the many variations of Charcot

Marie Tooth disorder. Globally, approximately 5 million adults and 1

million children have CMT; however, because of misdiagnosis or

non-diagnosis, actual statistics are expected to be higher.

CMT is diagnosed by clinical features of muscle atrophy, age of onset,

electromyography (EMG), nerve biopsy and through genetic testing.

Charcot Marie Tooth disorder (CMT) is a hereditary motor-sensory

neuropathy (HMSN). HMSNs are a group of progressive neurological

disorders that affect the motor and sensory units of the peripheral

nervous system.

CMT causes weakness because nerve signals are impaired (demyelinated)

before they reach the muscle. Over time this causes atrophy (a loss of

muscle strength) in various areas of the body such as the feet, legs,

hands and diaphragm. Although considered a " family disease " , people in

the same family are commonly affected differently. To date there is no

known treatment for disorder arrestment or to slow rates of progression.

CMT does not affect the brain's intellectual capacity. CMT affected

persons often far exceed average intelligence. Adapting to an incurable,

chronic illness and a life of great uncertainty results in ingenious

achievement, heightened creativity and extreme giftedness in developing

a unique manner for task accomplishment with the smallest amount of

physical effort.