Maddie’s journey with ectodermal dysplasia took a transformative turn when she expressed a desire to change her smile. With guidance from the NFED and a dedicated team of specialists, she found a path that preserved her teeth while boosting her confidence. Read her inspiring story of resilience and expert care.
Magic Moments, Stories of Resilience at the NFED
Magic moments happen all the time at the NFED! Marianne from the Board recalls adopting her son, Peter, from China. Affected by Clouston syndrome, Peter attended his first NFED Family Conference as a teen. Find out how it changed him. Plus, read about other Board members’ magic moments.
Finding Success in the Water, in Law and in Love
Lawrence Dillon read John Baker’s ectodermal dysplasia story and discovered they had similar journeys. The champion swimmer and attorney talks about how he, too, has successfully navigated a lifetime of “being different” by facing it head on.
Choose Positivity and Live the Life You Want
When John was born in the 1950s with HED, he spent most of his toddler years indoors, on doctor’s advice. Then his family’s minister said something to his parents that changed his life forever. The retired U.S. Navy Federal Service employee looks back on growing up with HED and the philosophy that spurred his success. He also shares his best tips for dealing with the heat when you can’t sweat.
Find Out How Six Boys With XLHED Are Sweating Normally
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
Being Born Without Adult Teeth: From Resentment to Empowerment
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
What I Would Tell My Middle School Self
For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.
4-Year-Old Wants to Bite Something With His New Dentures
It took years for a South Carolina family to find a dentist to make dentures for their son. Getting Beau to wear them was their next challenge. Read how strawberry Twizzlers made all the difference.