Hypohidrotic Ectodermal Dysplasia (HED)
Other Names: Anhidrotic ectodermal dysplasia, Christ-Siemens-Touraine syndrome
An Update from Carver
By Carver Claeys For as long as I can remember, I’ve had dentures. My mother made the sacrifices to give me the opportunity to feel like all of the other children who were smiling for one reason or another. Laughter on the playground with your friends. Smiling at your childhood sweetheart. My mother didn’t want…
A Tribute to our Scientific Advisory Council
Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve. The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED. The PCC focus is…
Key to Best Treatment
By Margaret Bennion Involved parents in their child’s dental treatment helps the children receive the best treatment possible. There are variations of ectodermal dysplasia and they differ from child to child. Numerous health care professionals are involved in their care. Many providers and/or parents give up or get discouraged because it is too difficult and expensive….
My Life’s Calling!
By Sarah Tevis Poteet, D.D.S., P.A. NFED Board of Director member since 2003 & Patient Care Council member I grew up as part of the NFED family as an affected individual that was missing some teeth. I was a part of an implant clinical trial at the National Institutes of Dental and Craniofacial Research as…
What an Inspiration…
Meet Meg. She’s a high school student from Mequon, Wisc. who decided to hold a fundraiser in honor of her sister, Meredith. Meredith has a rare disorder called hypohidrotic ectodermal dysplasia or HED, which results in multiple missing teeth, sparse hair and a reduced ability to sweat. Meg enlisted her friend to help. Since Meg…
It’s All In the Genes
The pattern of inheritance for an ectodermal dysplasia is crucial to understand whether or not there is a risk for relatives of an affected individual to be affected.
Our 2016 Send a Kid to Camp Campaign is Live!
As many of you know, the NFED kids have a great time at Kays’ Kids Camp during conference! They create meaningful friendships, play, have fun, and get to enjoy moments with others without having to feel different from their peers. As many of you also know, it may be a difficult time financially to send…