Recently, we had a family ask if we had any information about how ectodermal dysplasia affects the voice. The National Foundation for Ectodermal Dysplasias (NFED) did support a research project in the late 1990s that Kelly Mabry, Ph.D., Associate Professor at Southern Connecticut State University did. While the study is older, the information is still…
My Smile – Always Has Been, Always Will Be!
Background Born to a mother with ectodermal dysplasia, I grew up knowing how my condition affected my teeth, and that someday I might need dental implants. I had eight natural teeth, four incisors and four molars – two of each on top and bottom – and wore an upper and lower removable denture starting in…
Evan’s Story – Part II
(Editor’s Note: The following story is part two in a series written by Karen Forman, the mom to an adult son affected by hypohidrotic ectodermal dysplasia. Read part one.) By Karen Forman “Life isn’t about waiting for the storm to pass. It’s about learning to dance in…
I Love the Family Conference
By Jason D’Angelo I love the Family Conference. It’s my second family and after as many times I have been, I still get so much out of it. I was fortunate enough to bring my girlfriend, Tiff (pictured above), last year which was a huge step in my life. She looks forward to going again…
Evan’s Story
By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise. Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world. So, Evan…
How This Teen Takes On Life With Ectodermal Dysplasia
By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…