Our Patients. Our Priority: Lee and Rita’s Story: Ectodermal Dysplasia 

This is a series of blog posts written from interviews with real Ozark Prosthodontics patients. These stories detail their own experiences. In some cases, names have been withheld or changed at patient request. 

It’s Lee’s junior year of high school at a boarding school in Arkansas, and his entire class is invited to attend a luncheon put on by the local Rotary Club. That morning, Lee remembers looking forward to the event, preparing for the day in front of the bathroom mirror. Unexpectedly, his false teeth fell from his retainer. 

“I was able to catch them before they went down the sink,” said Lee. “But then I was left in the predicament of what to do next. Do I go to the luncheon without my teeth? Or skip the event and leave people wondering?” 

Eating in public had often been a harrowing experience for Lee, who recalls his earlier years in middle school as “tough.” Issues with his teeth and being one of the only middle-school students with braces made him withdrawn and unsociable. He describes himself as being “bookish,” preferring to avoid talking to or especially eating in front of others. 

Luckily, Lee had made some very important friends at the boarding school – the maintenance staff. 

“I went to the folks I knew in maintenance and said ‘this is going to sound weird, but I need some super glue for my teeth,’” Lee remembers. 

Fortunately, through a bit of ingenuity and some fast-drying adhesive, Lee was able to avoid one embarrassing situation. Unfortunately, his struggle with ectodermal dysplasia didn’t begin or end with the Rotary luncheon. 

Lee was first diagnosed with ectodermal dysplasia in the 7th grade, during a frightening moment when he collapsed from heat exhaustion during summer football practice. The coaches were taken aback when they noticed, unlike the other players, Lee wasn’t sweating. 

A few days later, at an orthodontics appointment in Hot Springs, the pieces began coming together. “This guy starts pinching my arm and says, ‘you don’t sweat do you?” Lee remembers. “I said no, and he told my mom your son has ectodermal dysplasia.” Weeks later, Lee and his mother Rita went to Children’s Hospital for an official diagnosis and the picture of Lee’s condition became clearer.

Ectodermal dysplasia is a hereditary condition and manifests itself through disorders in the skin, hair, nails or in Lee’s case – sweat glands and teeth. After getting a proper diagnosis, Rita, realized nearly everyone in her family had the condition to varying degrees. She feared Lee would have to deal with the same struggles she had gone through for the rest of his life. 

The Wilsons went to a local orthodontic practice and a plan was set in motion. They wanted to pull what teeth he had out – which Lee says “wasn’t very many” – and give him a retainer with false teeth, putting off implants until later that year.

What was supposed to be a six-month process ended up being closer to three years. The bones in Lee’s mouth weren’t solid enough to support the implants. After dealing with a series of partials and retainers with false teeth through his junior high and high school years, Lee was resigned to the fact he would be wearing dentures for the rest of his life. 

While Lee began accepting the realities of slowly losing all his teeth, Lee’s mother, Rita Wilson, would not. 

“I didn’t want him to have to go through what I went through, or others in our family had to go through,” says Rita. “My father, my sister and I we were all in dentures before 30. But now that I had a name for it – ectodermal dysplasia – I wasn’t going to accept the fact that it was just bad genes that couldn’t be helped.” 

Lee says once his mother knew what to call their condition it “lit a fire,” and Rita started researching ectodermal dysplasia “obsessively.” Her research was oftentimes discouraging, many paths led her to dead-ends and confirmed what others had told her – that there was nothing she could do to make her son’s situation better than hers or her family’s.    

Rita’s path led her to the National Foundation for Ectodermal Dysplasia (NFED) website. She found events she could attend to learn more and even support groups. Rita recalls a moment at her first NFED conference. 

“There were geneticists and others who kept describing this disorder as ‘rare,’ and how it could come out of nowhere. Well, it may be rare for some, but in my family I grew up with 20 other people who were dealing with it to some extent, and they all looked just like me,” said Rita.  

After familiarizing herself with ectodermal dysplasia, Rita began to weigh the options for Lee, determined to make sure her son would not suffer as she did. 

“When he was growing up, I didn’t want to keep throwing money at making his teeth pretty, knowing he would most likely lose them” she said. “I wouldn’t mind paying the money to give my son a smile to make him less self conscious, but my sister and I went down this same path.“

“What’s important is making sure he can eat and get the nutrition he needs. At this point in my life I was pretty much restricted to a diet of soft food at 47. I didn’t want that for Lee. I wanted a real long-term solution,” said Rita. 

Rita was constantly told by dentists and orthodontists there was little they could do for Lee. The bone was too soft for implants and would degenerate too quickly for dentures to ever fit well. After years of little hope, Rita persisted. To her surprise she finally found an orthodontist in Dallas willing to do dental implants for Lee, only to be told her medical insurance wouldn’t cover the surgeries and implants necessary. Her policy didn’t cover “cosmetic” issues such as teeth implants. 

This was a frustrating moment for Rita. Just when she found the possibility of addressing her son’s issues, she found herself faced with a substantial hurdle. Paying for these procedures out of pocket was not a realistic option. Very few families could shoulder these types of expenses, with costs ranging into the hundreds of thousands of dollars. 

Just when the Wilson’s situation seemed to be at its darkest, Rita discovered one more lead to follow. Someone in the NFED support group recommended she try a practice they had heard about in Fayetteville, Arkansas. This support group user mentioned Dr. McNeel, a doctor at Ozark Prosthodontics who believed severe cases like her son’s should be covered by insurance. According to Dr. McNeel, conditions like Lee’s affect mastication and the body’s ability to receive nutrition. These were not cosmetic issues; they were quality-of-life issues.

If this was the solution they had been looking for, it had been in their home state– just a three-and-a-half hour drive away – all along. She and Lee decided to pay Ozark Prosthodontics a visit and were surprised at the reception they received. Especially since, unlike other offices, they seemed to be quite familiar with Lee’s condition. 

“I can’t explain what it was like. For the first time, the doctors knew more about the problem we have been dealing with than I did,” said Rita. “It was also the first time I heard the words ‘we can do something about this.’” 

By this point Lee was in college and what he describes as a jaded teenager. “My guard was up and I had my reservations,” says Lee. 

He says he didn’t have high hopes after leaving Dallas, but he remembers noticing something distinctly different about Ozark Prosthodontics as soon as he walked through the door. 

“It was refreshing. It was invigorating,” he said. “We met with Lori and she immediately said ‘yeah you have ectodermal dysplasia, we’ve dealt with that before.’”

“They also realized ectodermal dysplasia is not just an external issue people are going through. This effects how we chew, and you have to eat to live. It’s a real quality of life issue,” says Lee.

OP patient advocate Lori McNeel gave them a tour of the facility and assured them they could work together to get medical insurance to cover the process. 

“Lori is a force to be reckoned with,” said Lee. “ Meeting her is what sets everything apart. No other prosthodontics office has a person like Lori, who really walks you through the process every step of the way.” 

Lee’s journey did not end after meeting the staff at Ozark Prosthodontics. There was a long road ahead of molar implants, two sinus lifts, growth hormones and transplants. But the Wilsons did have the peace of mind knowing something could be done, and Lee was on the way to being able to eat, smile and talk normally – something so many of us take for granted.

“I was too young to appreciate it at the time, but in my later years of college, I realized what mom had done for me,” said Lee. “After all the braces and retainers growing up, she never gave up hope. She fought for me for three to four years after everybody telling her nothing could be done.”

Rita came to Ozark Prosthodontics in hopes that her son would have a better quality of life and not experience the issues she faced. Which is why it came as such a shock when Dr. McNeel and Lori McNeel turned their attention to her as well. 

“They asked when they could get me in?” says Rita. “I didn’t know what to say. My whole purpose was to provide this for Lee. I figured my window had closed.”

Rita told Lori she couldn’t afford implants and the opportunity had passed her by. However, Lori was determined something could be done. And, like Rita, she wasn’t in the habit of giving up so easily.

“You have the same disorder,” Lori said. “The coverage should apply.”

After a very long process involving many surgeries, multiple sinus lifts and a long road to recovery. Rita says her life has drastically changed for the better. She immediately took notice after one of her first surgeries, a bi-lateral slip. 

“I didn’t realize how hard it had become to breath. My sinuses were slowly lowering. But when I woke up from that first surgery, I was able to breath better than I had in years. It was much easier to draw in air,” said Rita.  

“I can talk to people without worrying that my dentures are going to fall out at any time, and before I just ate what I was able to in order to survive. Now, I’m eating food and actually enjoying it.” 

Other changes were taking place as well. For years Rita had avoided eating in public – restaurants and meal gatherings were out of the question. Once resigned to the fact that she was going to be limited to a soft diet for the rest of her life, she was now enjoying food for a change.

Today, after many procedures, Lee has a fully functioning smile. Still, perhaps his fondest memory of his experience is remembering his mother enjoying a simple snack. Something she hadn’t been able to do since her 20’s.

“My mom loves apples but hasn’t been able to eat them for decades. She went and bought some and sliced them up and dipped them in caramel. It was like watching a little kid. You’ve never seen someone so happy,” says Lee. 

Both Lee and Rita will be dealing with the effects of ectodermal dysplasia for a long time to come. The degenerating bone tissue will make it necessary for follow-up visits and procedures down the road. Still, Rita takes comfort in the fact her “family” at Ozark Prosthodontics will be there for her as she and Lee face new challenges ahead.   

“I have no doubt that Lori and Dean McNeel will be a part of our lives for the rest of our lives,” she said. “When you’ve gone through what we’ve gone through, and you find someone who has done so much to change our lives for the better, we’re never walking away from that.” 

If you have a story similar to Lee and Rita’s or know someone who is suffering from oral pain issues affecting their quality of life, OP can help. At Ozark Prosthodontics, Our Patients are Our Priority. 

Scroll to Top