By Lindsey Higgins When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin. After feeling alone and confused most of my life, and uncomfortable in my…
The NFED Changed the Dialogue About our Son's Condition
By Marci Mortensen I was seven months pregnant with my second child when I first heard the words ectodermal dysplasia. Our first son Sawyer was 20 months old at the time. Although he was slightly underweight and susceptible to frequent respiratory infections, he was abundantly active and happy, and certainly giving these first time parents…
I'm on My Way!
Good evening! I am in Hayes, Kansas and headed for Denver and then to Colorado Springs. I am on my way! We have Tim’s Expedition packed to the max and of course, full of my treats for the drive. We left last night after Tim got home, a little later than we hoped. The wind…
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…
NFED In Our Back Yard!
By Lisa Jonak My son Cory, was about 6 years old before he was officially diagnosed with ectodermal dysplasia during an NFED family conference in Collinsville, IL. Ironically, the NFED was basically located in our back yard. I did not realize how lucky we were to have this resource so close. They helped us find a…
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…
A Mom's Take on the Dental Implant Journey
By Tina Moss Being a mother is challenging. Being the mother of a child with hypohidrotic ectodermal dysplasia (HED) takes challenging to another level. After our son Jacob was diagnosed with HED, his father and I knew that he would require a lot of dental work culminating in implants when he was a young adult….
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,…