You have many different treatment options for teeth affected by ectodermal dysplasia. It can be overwhelming to know what’s the best thing to do for you or your child. Learn from our dental experts which treatments to consider to achieve an age-appropriate dentition.
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.
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.”
At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).
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.
Kelly and Eric Koch became first-time parents when they welcomed a beautiful healthy girl named Clara. When sweet Clara’s baby teeth erupted and were shaped differently, the Kochs started on a long and humbling journey to understand why. The answer is a diagnosis that is one of the rare of the rare. Kelly bares her heart as she shares her journey as a new mom.
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.
Possible ectodermal dysplasia. Genetic. Life-long battle. These are not the words a parent wants to hear about their sweet little girl. But, Ashley Braden heard them and she cried. Then she reached out to the NFED for help.