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.