By Maureen Having ectodermal dysplasia can be hard. Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone. I don’t know which type of ectodermal dysplasia I…
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…
Life with Ectodermal Dysplasia
By Julie Kennedy Thirty years ago, my family began the journey called, “life with ectodermal dysplasia.” We didn’t know it at the time, but my husband had tooth and nail syndrome. Many in his family had it, but it was just shrugged off as weird shaped and missing teeth, a “Kennedy Thing.” It was not discussed…
Keep on Smiling: The Story of Lucy’s First Surgery
By Lucy Davies January 27th, 2017 is a date I will never forget. To most people, it marked the one week anniversary of Donald Trump’s inauguration, but I had something far more personal scheduled for that day – my first dental implant surgery. When growing up with ectodermal dysplasia, “implants” was a word constantly thrown…
13 Things Ectodermal Dysplasias Families Wish You Knew
Helping others understand what it’s like to live with ectodermal dysplasias is one of our goals for Ectodermal Dysplasias Awareness Month. Here are 13 things some families affected by the rare condition wish you knew. I wish people knew that they all are braver than you think, stronger than they seem, and smarter than you think!…
From Shy to Smiling Spokesperson for Ectodermal Dysplasias
By Dawn Richardson I rarely had to trim Savannah’s toenails after she was born, and her fingernails were thin and brittle. I had very little experience with infants, so I did not realize this is not typical of children. Her baby teeth erupted mostly on schedule. Aside from being small and missing a set of…
I AM
Catherine Hicks sent us a poem her son, Sam, had written when he was in the 8th grade. It’s amazing the difference a few years can make. “He is now a thriving college freshman. Mac from New York helped me, as a mother, let Sam leave the nest.” By Sam Hicks I am different. I…