By Elizabeth Hoverman
Hello everyone! My name is Elizabeth and I was born with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This syndrome affects my teeth, skin, nails, fingers, toes and tear ducts. As with most people born with ectodermal dysplasias, missing and malformed teeth are the big issues. My teeth had small physical structure.
I’ve always had a hard time with chewing food especially with any kind of meat. When I was a teenager, I had braces for 1.5 years and a palate expander. There was a pause in treatment until after I graduated from college to allow my facial structures to reach full growth.
My mom and I contacted the National Foundation for Ectodermal Dysplasias (NFED) and asked if there were any recommended dental clinics near us and if they could refer us there. We were referred to one of the NFED’s Dental Treatment Centers, The Ohio State University (OSU), to meet with Lisa Knobloch, D.D.S., M.S., due to her extensive experience with ectodermal dysplasias patients.
Six-Year Journey
Together, we formed a plan that would end up being a six-year-dental commitment consisting of a team of orthodontic, periodontic and prosthodontic professionals/graduate students. I first met with orthodontics who told me that I would need braces and have a dying tooth extracted which would leave a gap to be filled later. The orthodontia changed my bite and widened my palate at the same time. This initial phase lasted two years.
Then, I met with periodontics regarding possible implants and to get my gums healthy. Two implants were recommended along with gum reshaping for aesthetics.
My first experience with an implant would be quite the learning curve. The graduate student placing the implant discovered that my gums are really thin due to being of Asian descent. He also found out I didn’t have sufficient bone to place and hold the implant. This required getting a bone graft at the same time as placing the implant.
The doctor and I would get bad news a few weeks later when my mouth got an infection. My body had absorbed the bone graft causing the implant to fail. The entire process had to be repeated but this time antibiotics were utilized and more bone material was placed. The healing process took several months.
Crowning Achievement
Once completely healed, Dr. Mulla, a prosthodontist, took over to start creating crowns for my teeth. All of my teeth would need crowns requiring many trips to Columbus for molds, fittings, and refinements. During this time, we discovered that another tooth was dying requiring a second implant and extended healing time.
The second implant on my top right front tooth went more smoothly. Dr. Stanger, a periodontist, made sure to place extra graft material while placing the implant. She also gave me a good dose of antibiotics. Then, I had to wait for this to heal.
The last step, the final crown over the implant, would take longer than anyone of us could have expected due to the COVID outbreak. Everything was put on hold while OSU figured out how to safely see patients. By this time, both Dr. Mulla and Dr. Stanger had graduated and I was assigned a new prosthodontist, Dr. Lou, to finish.
Exhausting Process
The entire process was physically, emotionally and financially draining. I endured entire days of having my mouth open during the various procedures and soreness afterward. There were times I felt embarrassed about the gaps in my teeth at social events.
My insurance didn’t cover very much and there wasn’t time to go through years of appeals. However, the experience had its positive moments. My mother and I bonded during the years spent driving back and forth to Columbus and rewarding ourselves with lunches or other fun activities. I would also get to know a very caring group of professionals making my incredible smile possible.
Elizabeth Hoverman, 32, is a guest blogger for the NFED and an artist living in Ohio. Learn more about Elizabeth.
I loved reading about your experiences, it reminds me of the same kind of process that I had done to my teeth! I’m so sorry the process was long and drawn out with the second bone graft and covid on top of everything else!
I can also totally relate to not being able to stop smiling after I got my dental work done. I thought it would take time to get used to, but it came so naturally and I couldn’t stop.
Thanks for sharing your story!
Thank you for taking the time to read the story! It means a lot. I’m so glad your smile came naturally. It makes a world of a difference eating food and boost your confidence!
I’m so happy for you you! Your smile is beautiful! I wish you the best! I know how difficult it is my daughter Erica has ectodermal Dysplasia.
Thank you so much for your kind words! Awww I wish the best of luck with her journey. It’ll be so worth it in the end!
Good for you, I had dentures at age 11, and stopped wearing them after 30 years. My bones, and teeth are abnormally hard, I have few sweat glands and very little body hair. As a kid I told other kids I lost my teeth falling out of a bunk bed. Easier than answering questions.
That’s a good made up story! Thanks for sharing your thoughts!
You are absolutely beautiful! Your smile is contagious and your positive mindset, despite your struggle and traumatic challenges, it was not in vein. The light you exude shows the path of great purpose that will have a profound impact in our world.
Your are hope for our children.
Thank you!
Keep smiling its contagious.
Aww thank you for your very kind comment! Yes it good to always try to look on the bright side of things and there are many blessings depict the set backs!
Aww thank you for your very kind comment! Yes it is good to always try to look on the bright side of things and there are many blessings depict the set backs!