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.