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…
BE HEARD. INSPIRE OTHERS. BE YOURSELF.
Wow! Can you believe it is February already? We all know what happens in February – Valentine’s Day, Ground Hog Day, the Super Bowl. But more importantly, it is Ectodermal Dysplasias Awareness Month, #EDAM2016. This month, we are striving to raise the positive awareness of this condition which affects an estimated 2 in 10,000 births….
Treating Common Nasal Problems in Ectodermal Dyspalsias
The following is an excerpt from the NFED’s “A Guide to the Eyes, Ears, Nose and Throat in the Ectodermal Dysplasias.” The common nasal problems of ectodermal dysplasias revolve around the management of nasal dryness and are usually managed without surgery. Surgery may be may be of some benefit if there is an associated internal deformity…
Smiling About Snot and Spit
Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.