My Disorder Didn’t Affect My Dreams

By Tova Fuller,  M.D., Ph.D. I was three or four years old when my mother was distressed my teeth just weren’t coming is as they should have. A dentist diagnosed me with ectodermal dysplasia, and within time, it became clear that I could not sweat as well as other kids. I’d run around the yard…

No Longer Feel Isolated With AEC Syndrome

By Shannon Brown Our daughter, Erin, is five years old and is affected by ankyloblepharon-ectodermal defects-clefting (AEC) syndrome, a form of ectodermal dysplasia. She was born with extensive and severe skin erosions. Since she was weeks old, the National Foundation for Ectodermal Dysplasias (NFED) has been a part of our lives, offering educational, emotional and financial…

The Missing Piece of the Puzzle

By Lindsey James Like many of you, my path to discovering the National Foundation for Ectodermal Dysplasias (NFED) started with a search for answers or pieces of the puzzle, a Google search to be exact. After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, I was tired. Desperation Our life was…

Make time to visit with your NFED family

By Meredith Grimes Our first  National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week.  We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…

Evan’s Story – Part III

By  Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…

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…

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