There are over 150 differnt types of ED. Amber is affected by EEC (Ectodermal Ectrodactyl Clefting Syndrome) There are approximately 4,000 know documented cases of ED, and Amber is one of approximately 125 people in the world affected by EEC.
Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate (EEC Syndrome) is a rare form of ectodermal dysplasia inherited as an autosomal nt genetic trait the symptoms of which can vary from mild to severe. The most common symptoms found in patients with EEC Syndrome are: missing or irregular fingers and/or toes (ectrodactyly), abnormalities of the hair and glands, cleft lip and/or palate, or unusual facial features, as well as abnormalities of the eyes and urinary tract.
Since this abnormality is so rare, most individuals feel they are the only ones affected by it, at least, until the find out about the NFED, and attend a conference. This conference has had a life changing effect on us all, for the good of course.
Amber, Rockford, Cindy and Russ just attended our first conference. They have been holding conferences for 28 years. Please take a moment and look at the pictures from the conference.
