Hi Mira
just joined this but all i can say to you is, when my daughter was diagnosed 18 yrs ago. the doctor tried to explain to me in laymans terms and as she explained to me. Ectodermal dysplasia is named so because ectoderm means outer so its physical what you can see. Dysplasia meaning displaced ie wrong at the same time my daughter health visitor had been tellin me that she was always way ahead of herself.
If its any consolation I am not a carrier or do i have ed, but I have never finished a book either and rarely do I watch a film from start to finish in one sitting lol