Today is a big day in our family. My 16 year old is getting the braces off. Pretty normal stuff, kids across America are getting their braces off today, but this case is different. My daughter is different. Turns out she was born with a condition called ectodermal dysplasia.
What is ectodermal dysplasia?
According to the National Foundation for Ectodermal Dysplasias, they are “inherited disorders that involve defects in the hair, nails, sweat glands and teeth. The conditions are a remarkably diverse group of disorders which may also affect other parts of the body. The ectoderm contributes to the formation of the lens of the eye, parts of the inner ear, the fingers and toes, and nerves, among others. Therefore, ectodermal dysplasia may cause these parts of the body to develop abnormally.”
For my daughter Emma, this condition has primarily affected her teeth. I remember when she was about seven and the dentist said, “She’s missing teeth, a lot of teeth”. While her baby teeth appeared fine, he was referring to her adult teeth. She was missing 10 teeth and several of the baby teeth would eventually become fused to her jaw bone. He tried to prepare us for the long process she was facing. There was no easy fix.
That was nine years, two bone grafts, two surgeries, and two sets of braces ago…so yeah, today is a really big deal. While there are still at least two years left in her treatment plan, the braces come off and the first round of veneers and bridges get put in place today.
She found out yesterday her bone grafts from 2014 did not do all they needed to do in order to move forward with her more permanent implants, in fact more bone grafts into her jaw will be required in the very near future.
So how has this affected her over the years?
- We have virtually no smiling school or family pictures of her…at all, definitely no smiling with teeth showing. As you can see above, she has mastered the no show selfie. We don’t think much about it when she is with us as she smiles and laughs, but then you look at the pictures…at a time everyone else was not thinking about anything in particular, enjoying the moment, you can see that she was well aware of her teeth.
- She eats like a bird. Turns out none of her back teeth came together and touched until the past 18 months or so.
- At any given time her phone camera roll has a collection of teeth #goal pictures.
- My gorgeous child is very self conscious.
- She is also tenacious and determined to the care of her teeth and do whatever it takes to support her treatment plan.
I’m so proud of her. She is a beast on the inside with a humble soul. Can’t wait to see the affect this change will have on her.
One of the most important things we have learned is that this condition requires a team approach to treatment. In our case: pediatric dentist, orthodontist, oral surgeons, prosthodontist all had to work together as one. Our prosthodontist is the ring leader of our treatment team and came recommended by the NFED as a specialist in this disorder.
For more information on this disorder, please check out the NFED website.
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