Ectodermal dysplasia runs in Kylie Reeder’s family. After she married, her in-laws learned that the daughter they are adopting may also share the condition.
An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.
Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.
Tova was diagnosed around age three with ectodermal dysplasia. Since then she has overcome bullies, dentists who should not have treated her, awarded the title of Miss Teen Dance of Chicago in high school, earned three graduate degrees, including a Ph.D. in human genetics and an M.D. Learn what having ectodermal dysplasia has taught her.
Learn about the Brown family’s journey when their daughter, Erin, was diagnosed with Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome. They also talk about how their NFED family has been a tremendous help over the last 5 years.
After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.
By Meredith Grimes Our first National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week. We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…
By Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…