“Keegan’s denture adventure continues! He’s now 16 years old and this is his third set of dentures. What a difference!” – Linsdey, Keegan’s mom
Like many kids affected by x-linked hypohidrotic ectodermal dysplasia (XLHED), Keegan’s denture adventure began when he was just three years old and only had one tooth. His mom knew it was essential to get him teeth to transform his health – and his smile.
The Dental Struggles of Living with Ectodermal Dysplasia
Individuals affected by ectodermal dysplasia face extraordinary challenges just to have healthy, functional teeth. Because of this, we love when you share with us before and after photos from your dental treatment journey with ectodermal dysplasia.
Rarely, is your story straightforward. Most often, it’s filled with speed bumps and even outright road blocks as you try to access the care you need.
Treatment Delays and Financial Hurdles are Real
Choosing a dentist with experience in treating the conditions is optimal but may be hard to find. You may not even know what good dental care looks like or what to expect. A dentist may want you to delay treatment because he thinks your child is too young for dentures. And once you have found the right dentist and treatment plan, you have to find a way to pay for the expensive care. We understand why you might get tired and give up.
But, the journey to oral health and the stories below are proof that it’s worth it! Meeting your dental needs is just as important as any other medical need. That’s why the National Foundation for Ectodermal Dysplasias (NFED) advocates strongly for early intervention for dental care and ongoing treatment as you get older. The advantage of dental care is not just about having a pretty smile. It’s also about functionality!
Expert Guidance from the NFED Oral Health Care Guide
According to the dental experts who wrote the NFED’s guide, Oral Health Care for Individuals Affected by Ectodermal Dysplasias, the goal of dental treatment for individuals affected by ectodermal dysplasias is to provide an age-appropriate dentition that optimizes chewing function (and thus nutrition), oral/facial development, speech, swallowing, and esthetics. Dental care can create a sense of confidence and help a child’s features align with their age and development.. You can reference the guide to learn which dental treatment options are recommended for your age and which are not.
Celebrating Smiles: 13 Inspiring Journeys
Today, we are honored to share 13 individuals’ dental journeys. We celebrate their new smiles and their perseverance! They never gave up in their quest to get dental treatment.
Nora, X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED)
“She beams with confidence and loves to show off her new smile to everyone she meets!” – Ashley, Nora’s mom after Nora got her denture. Read Nora’s story.
Gavin, XLHED
“Gavin received his diagnosis of HED after he wasn’t developing teeth around 18 months. There is no pediatric dentist in our area who could help us. We traveled to the University of Minnesota pediatric dental school to have dentures made. They are fixed to the teeth that he does have. First, we received the bottom denture, then two months later the top. He will have the same set until he’s seven years old. Getting dentures has made a major impact on Gavin’s self-esteem and confidence. He smiles at every chance he can get since getting his teeth. It took about a year and a half to find a place to get dentures for him, and get it covered by health insurance.” – Karissa, Gavin’s mom
Amanda, Ectodermal Dysplasia
“I was adopted at birth, so I lived most of my life with mostly baby teeth and only a few adult teeth, not knowing it was connected to a genetic disorder. It was not until I was well into my 20s that I connected with my birth family and learned there were others like me!
My journey includes full bottom implants when I was in high school (back in 1998 when implants were a very new thing.) When I was about 30, my dentist suggested the “snap on smile” which was a removable piece (like a retainer) I would wear over my baby teeth on the top. The confidence it gave me was life changing! But it had its downfalls since it was difficult to eat with and the material it was made from would wear down and break. But it was a temporary solution since I could not afford other extensive work.
Finally, at the age of 40, my few baby teeth on the top gave in and had to be pulled, leaving me with large gaps and only a few teeth left – not even enough to chew properly. Due to my genetic condition and very thin bone structure, I was not a candidate for upper implants. My dentist, along with other area dentists, actually worked together to develop a plan that included a year and a half of Invisalign and then two bridges (still not covered at all by health insurance of course). It’s been just over a year and I could not be happier with the outcome!” – Amanda
Brooklynn, WNT10A
Brooklynn’s teeth are small and shaped differently due to ectodermal dysplasia. Other teeth were simply missing. She also faced problems with cavities since the enamel on the teeth was so thin. X-rays showed that Brooklyn does not have any adult teeth. Her parents chose a treatment plan that included getting crowns to reshape the teeth and give her full functionality. Their goal is for Brooklyn to retain the teeth as long as possible. Her mom, Ashley, noticed that since getting the crowns, her five-year-old daughter is smiling more confidently, eager to show everyone her new teeth!
Carter, XLHED
“Carter has been visiting The Ohio State University Dental School since he was four years old. He was finally ready for his first set of dentures as a sixth grader. When it was time to replace them, COVID happened. We had to wait until his sophomore year to get the new set. He’s now 18 and thriving in the carpentry program!” – Meredith, Carter’s mom
Maddie, Type Unknown
Maddie still has most of her baby teeth, although they are widely spaced and conical in shape. But, x-rays show she will only have two adult teeth. For a long time, Maddie was content with her smile and not interested in exploring dental treatment. That changed when she entered sixth grade. Working with a team of dentists, she has had bonding to reshape the conical teeth and orthodontia to move her teeth to close the gap in her front teeth. Her dental journey is still in process as she wears Invisalign braces. Her mother, Beth, reports that Maddie is super happy with her new smile and we love to hear that.
Luke, XLHED
“Luke was diagnosed with XLHED when he was two years old. For the first two years of his life he was misdiagnosed with various disorders and diseases due to his variety of symptoms linked to his hypodontia and lack of the ability to sweat. We were very fortunate to find a geneticist who understood XLHED and identified him for testing immediately. He is now six and thriving at school and has a full set of ‘chompers’ to help him eat. He is so smart and just the happiest little boy and we are grateful for the connections we have made through NFED and all of the resources to help us be advocates for him.” – Jessica, Luke’s mom
Jessica, WNT10A
“My name is Jessie. Through DNA testing, I was diagnosed with ectodermal dysplasia at 33 years of age in 2022. I was born missing 19 adult teeth. In my two and a half years of treatment at Ozark Prosthodontics, I have experienced five intense, in-depth dental surgeries removing all of my natural teeth, adding 14 implants, and completely rebuilding my entire bottom jaw due to bone atrophy over 30 plus years. I am fully implant supported. I am still currently wearing temporaries as we are waiting for my last three implants to heal from my August 2024 surgery (Surgery #5). I am hoping all implants will be healed and we can move forward with delivering final porcelain teeth by the summer of 2025.” – Jessie
Henry, Oculodentodigital Dysplasia (ODDD)
Oculodentodigital dysplasia is a type of ectodermal dysplasia that causes teeth to be smaller than normal, missing and have thin or underdeveloped enamel. Henry was born with only five permanent teeth. At the age of 17, he had surgery for implants which completely transformed his smile!
Jedidiah and David Anwar – XLHED – Nigeria
“We are happy to announce to the NFED family that our sons, David and Jedidiah, have finally gotten their first dentures; giving them reasons to smile.” – Jeffery
Gabe, Hypohidrotic Ectodermal Dysplasia
“My son, Gabe, was born with HED, which runs in our family. My brother, and my great-grandfather both had it. Gabe has struggled with confidence and always wore a mask to hide his handsome face. He received his new teeth from The Ohio State University. He had the most amazing dentist!” – Angie, Gabe’s mom
Beau, XLHED
At age four, Beau kept asking his parents, “Where’s my teeth?” His parents, Kristie and Mitch, had been trying for three years to find a dentist who was willing to provide dental treatment to their toddler affected by XLHED. “They didn’t want to do any prosthetics or anything until he was like 7, 8, 9, a lot older. I was like, he needs something when he goes to school. Kindergarten is totally different from day care. At daycare, he has been with the same kids for four years. But going into kindergarten, I don’t want him to feel left out. It was also really starting to affect his speech.”
With help from the NFED, they found a dental partner in Dr. Simancas at the University of North Carolina. Kristie and Mitch drove three and a half hours one way so that Beau could get his first dentures. He adjusted well to them, until he accidentally threw them away at day-care. Since then, an unexpected new tooth has erupted and delayed getting a bottom denture replacement. An x-ray showed that Beau will have more adult teeth than originally thought. The family is working with Dr. Simancas on the next phase of his long-distance dental treatment.
Soren, Type Unknown
Soren, 25, grew up resenting that he was missing 13 adult teeth. It took a toll on him emotionally. “My lack of teeth is something that I struggled with for many years for both practical reasons and for my self-esteem…I had trouble eating certain foods, and, most disappointingly, I was unable to bite into apples for years.” Today, Soren is grateful for what he calls “world class dental care” when he got dental implants to replace the missing teeth.
Access NFED Resources
We hope these stories inspire you to keep going in your dental journey. You can find lots of informational resources on the NFED website to help you understand dental care options. Begin in the library and in the treat section. You can also find lots of great articles in our blog such as 15 Ways to Help Your Child Get Ready for Dental Visits and Dentures and 8 Tips for Getting Your Child to Wear Dentures.
You can check out the many NFED programs available to help you afford dental care, such as the Dental Treatment Centers, Straumann Dental Implant Program, the Insurance Assistance Program and the Treatment Assistance Program. As always, know that our staff is here to answer your questions and help you.
Share Your Before and After Dental Treatment Photos
Have you or your loved one recently completed your dental treatment? We’d love to hear your story, celebrate this milestone with you and share it with our NFED community.
Share Your Story