By Peter Brennan New South Wales, Australia When our children, Alice and Tom, were born, we were fairly sure where the parenting phase of our lives would take us. We would live in our little house in Sydney. Our children would go to the local school. We would celebrate birthdays and the holidays. We thought…
My Story: Emotional Resilience and Hope
by Marcela Hernandez Lack of confidence has daunted me all my life, from childhood and even into my adult life. I was born and raised in Uruguay, a small country in South America, the youngest child of a middle class family. They supported me and gave me everything within their possibilities, from material things such…
Why I Volunteer for NFED: My Son and Others Like Him
By Jill Radley I found the NFED in 1992, upon the recommendation of my childhood dentist at the University of Minnesota. When I received the literature packets I had a light bulb moment. I looked at the pictures and I felt that I was looking in the mirror. It explained so much to me. I…
What A 10-Year Old Girl With HED Wants Her Dentists to Know
The following is a speech delivered by 10-year old Allison at a Dental Pathology Class in the Dental Hygienist Program at Des Moines Area Community College. She and her mother, Jenny, presented at the class for Ectodermal Dysplasias Awareness Month. Hi everyone, my name is Allison. I am a 4th grader in Iowa. My parents tell me that…
The Best He Can Be
By Gina Quintanar It’s been almost 16 years since my son Alex was diagnosed with ectodermal dysplasia. He was about four months old when I took him with me to a dentist appointment. The dental assistant was playing with him and asked if I had ever noticed that he had no body hair. I said that I…
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…
What an Inspiration…
Meet Meg. She’s a high school student from Mequon, Wisc. who decided to hold a fundraiser in honor of her sister, Meredith. Meredith has a rare disorder called hypohidrotic ectodermal dysplasia or HED, which results in multiple missing teeth, sparse hair and a reduced ability to sweat. Meg enlisted her friend to help. Since Meg…