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.
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 I. 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 Dr. Jonathan Korostoff spoke about dental restoration at the University of Pennsylvania Dental School.
The National Foundation for Ectodermal Dysplasia has partnered with Straumann to provide dental implants free of charge to patients with ectodermal dysplasia. Dr. Korostoff, as well as the student residents and faculty of the U. Penn Dental provide the technical expertise and perform the procedures.
I was introduced to Dr. Korostoff that day, and overjoyed with the news, I was visiting U. Penn’s campus the next month.
I can say with absolute certainty, that Dr. Korostoff and U. Penn changed my life, starting that day. I met with Dr. Korostoff, Dr. Dang Vu La, and Dr. Vico Cambra 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 Straumann 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 began my new job at Princeton University, Dr. Cambra placed abutments onto the implants, and 2015 finished with a series of procedures to shape my teeth and test fit my eventual crowns. I had once believed it was an impossibility, 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. Dr. Cambra cemented my permanent crowns onto my teeth, and truthfully, I nearly cried out of sheer happiness. The doctors at U. Penn 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 and the people at the NFED made this possible. Dr. Jonathan Korostoff, Dr. Dang Vu La, and Dr. Vico Cambra made this possible. To them, I will be forever grateful. I cannot thank them enough throughout my entire lifetime.
But I will try.
Other links you may be interested in:
- Transforming Me
- What A 10-Year Old Girl With HED Wants Her Dentists to Know
- All I Want for Christmas is My Two Front Teeth
2 comments on “I Will Never Have a Perfect Smile!”
You were fortunate. Our experience with Dr. Korostoff at UPenn was not so positive. Our daughter’s team was far more interested in her doctor/student getting an A for completing an extensive project than they were interested in what was best for their patient. Beware conflicts of interest.
That is so wonderful. I also got my dental work done at Penn. I only had baby teeth so my process took two and a half years and was complete in 2009. I remember writing lots of letter in order to get my implants donatedk my surgery donated… I wonder if that got the ball rolling for you. The NFED and the people at Penn were all amazing and incredibly giving through the process. I had a total of 14 implants placed. I had many many papers written on my case and even got the chance to speak at a class at Penn. So happy for you!
~Maureen “Moe” Grumbine.