By Jenny Steele Three years ago, we heard the term ectodermal dysplasia for the first time. An internet search introduced us to the NFED. With a few clicks of the mouse, we found a wealth of information and a community of people who understood what we were facing. The NFED family would become a lighthouse…
EEC Chick at Work
By Heather McKelvie I volunteer for the NFED because I want to be part of something that is bigger than myself. When I was growing up, I secretly hoped that someone I knew would have a child with EEC, or at the very least, with a cleft lip and palate, or ectrodactyly. I imagined that…
Howdy!
By Susan Hamm I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce. After processing what I…
How Could I Make a Difference?
By Gina Quintanar When my son was 10 years old, he attended his first NFED Family Conference. I will never forget walking in the door that first day. I felt like for the first time since he was born, I could take a deep breath. I felt like I had come home to a place where…
Sun Protection
By Lindsay Harris Hey NFED family! I have been asked to use my knowledge based in skin to offer you all some information about what SPF is and why it is important! As we all know, ectodermal dysplasia affects each of us differently. Not only do we have the unique issues that ectodermal dysplasias present, but…
Overwhelmed With Love and Belonging!
By Terri Andrews I was born in a little rural area in Alabama in 1959. Not much was known about ectodermal dysplasia nor the type of ectodermal dysplasias I was born with called ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. If I received any type of major treatment or surgery, I had to travel at least 100 miles, which was not…
The True Meaning In Life Is To Plant Trees, Under Whose Shade You Never Expect To Sit!
By Ashli Matus-George Allyson Kelso’s Aunt Founder, Rally for Ally When Ally was born on December 22, 2004 in Oxnard, CA, it was an exciting time. A new baby, Christmas for her three-year-old big sister, Morgan. My then fiancé, Tom, and I were recently engaged and planning a wedding, Kristin had a thriving career, and…
Ectodermal Dysplasias and Relationships
A few weeks ago, I offered to write a post about dating. At the time, I had just written the post about ectodermal dysplasias in the workplace and I was thinking that dating would be another good topic to explore. The truth is, it’s actually kind of hard to determine how much ectodermal dysplasias is to blame…