An interview with Terri Andrews, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who had a 20-year career as a registered nurse. When you were growing up did you know you wanted to be a nurse? I always knew I wanted to be in the medical field but I wasn’t sure exactly what role…
NFED Families on Capitol Hill
By Marc Steingesser NFED Liaison On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members…
A Lighthouse to Guide our Lifeboat
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…
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…
Creating Connections of Hope and Comfort
By Rachel Buerman, NFED Liaison I am a pharmacist and my husband is a special education teacher with a license for both learning disabilities and emotional behavior disorders. For both of us it is important that we are comfortable reading, understanding and analyzing research articles and clinical trials that are published in professional journals. We…
Every Moment Has A Meaning
By Cory Jonak, Former Intern & Current Volunteer Throughout the course of our lives, we all will inevitably experience moments that have lasting impacts on us. While some of these moments are explicit and stand out, others can be more subtle and happen in an instant. However, no matter how small or big these moments,…
Ronan, Our Unborn "Celtic" Legend…What a Shock and a Joy!
By Dennis Claire, D.P.M., Father of Denny and soon to be Ronan Well before she was pregnant, my wife said, “If it’s a boy, he’ll be named Ronan.” Our first son, Denny, had a name which was predestined through generations of naming a son in the family Dennis. I didn’t want to break Irish tradition, and…
Growth and Nutrition for Children with Ectodermal Dysplasias
(This is an excerpt from A Family Guide to the Ectodermal Dysplasias Syndromes, published by the NFED.) Growth abnormalities are common in children with ectodermal dysplasias. Weight deficits are present at an early age and persist throughout adolescence. Height deficits are seen primarily in children with ectodermal dysplasias other than hypohidrotic ectodermal dysplasia (HED). Parents…