The Missing Piece of the Puzzle

After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.

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…

You’ll Never Be Alone Again

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…