National Foundation for Ectodermal Dysplasias (NFED)
The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. NFED offers a range of educational resources and events to meet the changing needs of those affected by the different types of ectodermal dysplasias.
I Will Never Have a Perfect Smile! by Alex Gaillard
I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile.
Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in my smile, as well as my brother’s. I wouldn’t learn this until years later, but it was upon his recommendation that my parents would contact a geneticist and we would first hear about ectodermal dysplasia.
Continue Reading Collapse Text
Starting in earnest during middle school, I would undergo a considerable amount of dental work: five years of braces, several operations to rebuild deficient bones in my jaw, countless impressions to estimate where teeth should be placed, all four wisdom teeth removed (the irony of which was not lost on me). I made the choice to attend a local college, purely for the fact that I had more dental work to be done. I was the only one of my friends who went to college with their braces still on. My parents and I had put years into this endeavor and it felt like it would never actually end because there would always be that next procedure, always another new doctor to see, another set of x-rays to take.
During college, the NFED reached out to my family for their conference in St. Louis. The conference was fun for my brother and me. We met several dozen people who we made quick friends with. As we enjoyed our time during the field trips, my parents attended a seminar where doctors spoke about their dental restoration programs.
The National Foundation for Ectodermal Dysplasia partnered with a company to provide dental implants free of charge to patients with ectodermal dysplasia. Doctors and student residents also provide the technical expertise and perform the procedures. When I heard this, I overjoyed with the news.
I can say with absolute certainty, that these doctors changed my life, starting that day. I met with them and started discussing treatment plans. The doctors worked within my school and work schedules, beginning our treatment plan in early 2014. Several visits and a few months later, the doctors and I were ready to place the implants. For my birthday, in December 2014, I finally had implants placed.
Implants aren’t ready for teeth overnight. It took several months for the bone around them to grow. I had abutments placed onto the implants, and in 2015 finished with a series of procedures to shape my teeth and test fit my eventual crowns. I had once believed it was impossible, but my wildest dream was growing closer.
On a rainy day in February of 2016, the dream that I had longed for became a reality. My permanent crowns were cemented onto my teeth, and truthfully, I nearly cried out of sheer happiness. The doctors and this program made my dream come true within three years of meeting them.
For the first time in my life I had a full set of teeth. For the first time in my life I wouldn’t be self-conscious about smiling in front of strangers. For the first time, I could smile as big as I wanted to.
Mary Fete, the Executive Director of the National Foundation for Ectodermal Dysplasias, the staff at the NFED and my doctors made this possible. To them, I will be forever grateful. I cannot thank them enough throughout my entire lifetime.
But I will try. Thank you.
These photos were taken on Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017. The NFED took 175 people to Capitol Hill educate legislators about ectodermal dysplasias, the challenges their families face with this disorder and the need for a federal bill to mandate health insurance benefits for dental care of the condition.