June is Ectodermal Dysplasia awareness month

For those who do not know, Brennyn has a very rare form of Ectodermal Dysplasia called ADULT Syndrome (An autosomal-dominant disorder with pigment anomalies, ectrodactyly, nail dysplasia, and hypodontia). ADULT stands for Acro-Dermato-Ungual-Lacrimal-Tooth (which is medical speak for the parts of the body the syndrome affects).

There are over 150 different forms of Ectodermal Dysplasia, affecting so many people all over the world. I know that before we adopted Brennyn I had never heard of Ectodermal Dysplasia. I have since met some amazing families who are trying to help other families by raising money to fund dental costs, cooling vests, etc.
Most people who have ectodermal dysplasia will have some sort of dental issues. Many do not have a full set of teeth and will need dentures at a very young age. I have discovered that the cost of dental work is unbelievable and many families simply cannot afford it (most insurance companies do not cover dental implants, etc).

I have become a co-director of the Canadian Ectodermal Dysplasia Syndromes Association, www.ectodermaldysplasia.ca. We want to create some awareness for these groups of syndromes.