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.
Mom of Teenager Reflects on New Prenatal Treatment for XLHED
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.
Developing a Non-Invasive Way to Diagnose XLHED Prenatally
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.
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.
Underrated Basketball Star with HED Excels on the Court
Jacobi Sebock’s killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.
The Baby With XLHED Who Now Sweats
Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”
A Day in the Life: Living with Hypohidrotic Ectodermal Dysplasia
Meet, Quiel Barrameda, a 35-year-old man from the Philippines who was born with hypohidrotic ectodermal dysplasia (HED). Learn how he stays cool and overcame major challenges with the love and support of his family.
AEC Syndrome: What to Know If Your Baby is Affected
If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.