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…
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…
I Will Never Have a Perfect Smile!
by Alex Gaillard I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile. Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in…
8 Things You Should Expect From Your Dental Care Team
The oral manifestations of the ectodermal dysplasias are often complex, and affected individuals might benefit from a team approach to evaluation and planning for treatment. Do not accept all team members as being equally trained and experienced. Ask questions… about the training of key individuals on the team; about the format for team meetings; about…
An Update from Carver
By Carver Claeys For as long as I can remember, I’ve had dentures. My mother made the sacrifices to give me the opportunity to feel like all of the other children who were smiling for one reason or another. Laughter on the playground with your friends. Smiling at your childhood sweetheart. My mother didn’t want…
My Life’s Calling!
By Sarah Tevis Poteet, D.D.S., P.A. NFED Board of Director member since 2003 & Patient Care Council member I grew up as part of the NFED family as an affected individual that was missing some teeth. I was a part of an implant clinical trial at the National Institutes of Dental and Craniofacial Research as…
When Life throws you a Lemon, make Lemonade!
By Henry and Catherine Bourgin Twelve-year old Henry is affected by XLHED, as is his mom, Catherine. They live in McLean, VA. Henry would like to share his thoughts on having a lemonade stand with baked goods during summer break: “When I’m at the lemonade stand, we like to talk to each other and when other people come we’ll have conversations….
The Moment My Son Taught Me About Strength
By Seth Ferris I live in Brooklyn, New York. And during any given week, any given day, I come in contact with millions of people, some of whom are not too shy about telling a complete stranger what they think of them. You bump into somebody and get a “Hey! Watch it!” or worse. You…