Ectodermal Dysplasias Advocacy Day approaches quickly and we need you, our National Foundation for Ectodermal Dysplasias (NFED) family, to be there. We try time and again to be advocates to all members of the NFED. But only you and your family are the ones who can make a difference in the lives of people affected…
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…
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…
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…
A Mom's Take on the Dental Implant Journey
By Tina Moss Being a mother is challenging. Being the mother of a child with hypohidrotic ectodermal dysplasia (HED) takes challenging to another level. After our son Jacob was diagnosed with HED, his father and I knew that he would require a lot of dental work culminating in implants when he was a young adult….
My Smile – 23 Years in the Making – Part 3
By Jacob Moss This is part 3 of my dental implant story. Part two left off after I finished up my upper jaw bone graft. As previously stated, following the bone graft there was a period of about six months before it could be determined if the graft was successful. During that time I returned to…
My Smile – 23 Years in the Making – Part 2
In case you missed it, my first blog post covered the initial planning stages of my dental implant process. Now friends, this was where the real fun began. My treatment plan included one upper jaw bone graft to build up bone density in my jaw, six upper implants that would eventually connect to a permanent…