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Clouston syndrome in families from Quebec Province, Canada

Replies: 16

Re: Objet : Clouston syndrome in families from ead Province, Canada

Posted: 1433246985000
Classification: Query
Surnames: Clouston
Diagnosis of CMT through neurological testing--electrodes in lower extremities family history, and characteristic high arches in feet. Some have scoliosis and hip problems. In the last several years I injured myself badly several times because of what turned out to be a balance problem..
that I was totally unaware of. Like many people with CMT I was/am very awkward.

The disease is unpredictable with many differences even within the same family. One may have problems as a child or not until mid years.

I am seeing the one specialist in this end of the state in an attempt to determine just what gene my illness is associated with. In the USA 80% that have CMT have CMT 1. I tested negative for that gene.

One of my sons who also has CMT started a self help, education group last month and although we expected 5 thirty people showed up. We expect many more in AUG.

If there is a chance you and or your family have this disease let me know and we can communicate further.

Best,

Therese W

By the way my grandmother was married twice with half of her children being Clouston and half Collins.
SubjectAuthorDate Posted
therese dillo... 1432937558000 
lalumiere50 1432950619000 
lalumiere50 1433115338000 
therese dillo... 1433246985000 
lalumiere50 1433284812000 
Brigitte Lamo... 1426272303000 
martinsen073 1549514098000 
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