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Clouston syndrome in families from Quebec Province, Canada

Clouston syndrome in families from Quebec Province, Canada

Posted: 1364434675000
Classification: Query
Hello, I was always diagnosed with Pachyonychia Congenita but after genetic testing, I have been correctly rediagnosed with Clouston's syndrome. It is in my family on the Lalumiere side, originating from my grandfather George Lalumiere. His family is form Quebec, CA. I cannot find anything about my grandfather, or the Lalumiere family that I am related to. I do know that this is a hereditary disease with a mutation on the GJB6 gene.
I am hoping to find others with this disease to see how/if we are related. This disease is also called Hidrotic Ectodermal Dysplasia or HED2.

Objet : Clouston syndrome in families from Quebec Province, Canada

Posted: 1377303092000
Classification: Query
Hello!
My family has the clouston syndrome and we are from quebec. We have it from our father who is a Lamontagne. I would be glad to share some information with you.

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

Posted: 1425352432000
Classification: Query
Hi, I just found your post and hope you are still out there. Our family also has Clouston Syndrome, which comes from our father and his mother. I didn't know its name until a few hours ago. Do you have any idea how it began or where or with whom? Yes, our family is from Quebec with ancestry back to the founders of Quebec and Acadia. I hope you reply.

Paula

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

Posted: 1426174482000
Classification: Query
Paula,

I have Clouston's syndrome, as do my two daughters. I don't have a lot of information, but would love to chat about it.

Katie

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

Posted: 1426272303000
Classification: Query
Hello Paula! I have a bit of information, I would be glad to share it with you. Here is my personal email, you can write to me there, it will be easier to communicate! (allo_brig@hotmail.com)

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

Posted: 1426272365000
Classification: Query
Hello Katie! I would be glad to share information with you about clouston syndrome. Here is my personal email, you can write to me there, it will be easier to communicate! (allo_brig@hotmail.com)

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

Posted: 1426289597000
Classification: Query
Hello Katie,
I started this message board to find my relatives from Quebec that have Clouston's syndrome. As my first thread indicates, the surname in which the defective gene for this disease is in the Lalumiere family. My grandfather moved to Massachusetts and I don't know if he had siblings or where he was born.
Have you found anyone in your family that has that last name or knows someone who moved to Massachusetts? My grandfather was born in 1902 and died in 1955. His name is George and he had a son (my father) and a daughter that also had this disease. I am trying to find out when this started as it is a hereditary gene.
I have a lot of information since I went and researched this disease as well as went to a genetic research hospital and was tested for the marker that indicates Clouston's.
I see that you reached out to Paula. I can also tell you more about this disease as I have it too.
Sorry to hear that you and your daughters have to go through this. I hope your lives were better than mine.
More importantly, I am hoping to find someone related to me as I think this should be a way to find out if we are from the same family a long time ago.
I hope to hear from you. Paula and I have been talking and we cannot find a link to our families, just the disease.
Michelle Lalumiere

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

Posted: 1426290212000
Classification: Query
Sorry, I do not mean to say that the disease is only in the Lalumiere family. I am only saying I am trying to find out more about the Lalumiere family who came from Quebec and had this disease. One of the research papers I read was done on a large family from Quebec which had many family members with this disease. Of course the family names were left out but the paper indicated they were all related.
I am not sure if they intended to do the research on related people or they were studying people with the disease and then found they were related through DNA tests.
Good luck and let me know if I can help you or you can help me.
Michelle Lalumiere

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

Posted: 1426290487000
Classification: Query
I emailed you Brigitte.
Thank you for responding.

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

Posted: 1426296960000
Classification: Query
Edited: 1426297048000
Michelle,

I had a tough time with it growing up. I hope my daughters can accept it better than I could.

My aunt traced our line of the syndrome back to France. Members of my distant family did certainly end up in Quebec. There were a lot of female children, so the original family name was hard to follow as most acquired new married names.
I have just started digging into this and have piles of information she has provided me that I need to sort through.
There may possibly be a link?

Feel free to email me (katieinbanff@hotmail.com)
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