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

by Sam Hicks I am different. I wonder why I am this way. I hear people asking me why I look this way. I see people looking at me anywhere I go. I want to be normal. I am different. I pretend to be normal. I feel enraged inside. I worry about who I am…

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…

A Mind-Body Duelist

Twenty-six-year-old Christopher Barbey recently wrote about his experience with hypohidrotic ectodermal dysplasia in an article published by the Journal of American Medical Association. Titled Mind-Body Duelist, Chris explores how emotionally difficult it was for him as a teen. He was confronted with the need for dental implants instead of traditional dentures to replace his missing…

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