Lynne Thomas knew that ectodermal dysplasia affected hair, teeth and sweat glands. But a series of life experiences raised questions about her grip and fingerprints. Learn more about these unique syndromes.
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.
Having missing fingers can get you bullied. It can also help you find life-long friends. Read about Tyler, Zemery and Nollan’s special friendship and how going to the NFED Family Conference impacted them.
Donna Garrett-Miller details how her grandson, Noah, was born with complications that led to an Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome diagnosis.
Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.
At 45, Erica Merriweather has spent a lifetime being treating differently, even bullied, because her teeth are different due to ectodermal dysplasia. Now, she’s fighting to get treatment.
With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.