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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: 1432950619000
Classification: Query
Hello Therese,
I was genetically tested for Clouston and found to have the marker for the disease. It is a defect on the GJB6 gene. Growing up, my father and I were told we had Pachyonychia Congenita but a few years ago, I found a research paper that indicated people were incorrectly diagnosed with Pachyonychia Congenita and really have Clouston's Syndrome. When I went to the genetic testing lab (UMass Medical Research Hospital) they told me that the test for Clouston's is a 99.9% probability but Pachyopnychia is not. They did the Clouston's first and I was positive so they did not need to check for PC. I actually found a whole group of people from southwestern Quebec province that have Clouston's. I am in contact with a couple of them. My grandfather came from Quebec province but we don't know exactly where or who his family is. My father is deceased so I cannot ask any questions. We were shunned by others and so were these poor people from Huntingdon Quebec.
I hope your symptoms are more manageable than mine and I wish you success in finding whatever you are looking for. I am trying to find my grandfather's family. Growing up, I knew of no other people like me and that made it hard for others to accept and understand. That, in turn, made me feel terrible about myself.
SubjectAuthorDate Posted
therese dillo... 1432937558000 
lalumiere50 1432950619000 
lalumiere50 1433115338000 
therese dillo... 1433246985000 
lalumiere50 1433284812000 
Brigitte Lamo... 1426272303000 
martinsen073 1549514098000 
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