Joshua has endured 51 surgeries, life-threatening skin infections, overheating challenges and ever weeping eyes. His mom looks back on his childhood and journals about the medical issues Joshua faced and how they treated them. Read how this teenager is embracing life as an adventure and educating others about having AEC syndrome.
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.
The Most Beautiful Sight
The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.