Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
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.
Parents can get stuck on the “what ifs” in life and if things could have turned out differently. Becky Abbott reminisces about her son, Aidan’s journey with ectodermal dysplasia and her angst and stress. She can’t help but wonder how it all could have been different had the Edelife clinical trial been an option when she was pregnant.
The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.
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.
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.
Jackson is 2 years old, and he’s hungry all the time. He wants to eat. But chewing is just too difficult for him, and he struggles to eat every day. Read how his parents are coping with meal time and helping their toddler who’s affected by x-linked hypohidrotic ectodermal dysplasia. Plus, download our new medical article, Feeding Solid Food to Children Without Teeth.
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.