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…
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,…
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…
My Smile – 23 Years in the Making – Part 3
By Jacob Moss This is part 3 of my dental implant story. Part two left off after I finished up my upper jaw bone graft. As previously stated, following the bone graft there was a period of about six months before it could be determined if the graft was successful. During that time I returned to…
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…