Man with Rare Condition Has 21 Baby Teeth Removed
Jeffrey Cookinham has to remind himself that it’s okay to smile now. And that he no longer has to break up much of his food, like a bagel, before he eats it.
Because after 34 years of doing just that, it’s been a hard habit to break. He was born with Ectodermal Dysplasia, a complex inherited disorder that often involves defects in the hair, nails, sweat glands and teeth.
“As a child, my symptoms were so mild, it was tough to diagnose,” explained Jeffrey. “It’s usually noticed in children with more severe symptoms or who don’t thrive, and my growth percentage was normal.”
But as Jeffrey grew, 21 of his adult teeth never formed, leaving big gaps in between baby teeth that were shaped like small cones.
To adjust, Jeffrey had to cut his food in small pieces, always taking twice as long as others to finish a meal.
“People would always ask me, ‘what’s taking you so long?’” Jeffrey recalled. “It definitely resulted in confidence issues and never wanting to smile. I was pretty conscientious about hiding it as much as I could and avoided getting my picture taken.”
As the baby teeth continued to wear down—some right down to the gum line—he started searching for help.
“Over several years, I talked to different dentists and specialists who laid out various plans for treatment, but the costs were enormous and simply not feasible,” he said.
Jeffrey’s wife spotted a notice and encouraged him to attend a smile makeover seminar being held at UR Medicine’s Eastman Institute for Oral Health. After the seminar, Jeffrey approached the presenter, Dr. Konstantinos Chochlidakis, to see if he could help.
“Our team has treated patients of all ages with Ectodermal Dysplasia,” explained Dr. Chochlidakis, associate professor and program director for EIOH’s Prosthodontic Residency Program. “It’s heartbreaking what some of these patients go through. It can have a devastating effect psychologically and socially. It’s rare to find a team like Eastman’s that has all the specialists Ectodermal Dysplasia patients often need, like orthodontists, periodontists, prosthodontists and oral and maxillofacial surgeons.”
Dr. Chochlidakis and Dr. Alexandra Tsigarida, associate professor and program director for EIOH’s Periodontics Residency Program developed an extensive treatment plan to restore Jeff’s function and esthetics. The office administrator worked with the insurance company for six months before approval for almost 90% coverage was granted.
Throughout the next year and a half, Jeff underwent extractions, bone augmentation procedures, dental implants and final restorations.
“Dr. Tsigarida removed all the baby teeth, performed bone grafting and placed 11 dental implants,” Dr. Chochlidakis described. “I then worked on the restorative part and delivered 24 implant and teeth restorations including implant and tooth crowns and bridges to completely transform his mouth functionally and esthetically.”
“I always had full confidence in Dr. K and Dr. T,” Jeff said. “They were nothing but professional, explaining every step of the way and always worrying about my comfort more than I did.”
It’s hard for Jeff to believe when he looks in the mirror.
“I don’t go a day without thinking that this transformation is pretty awesome,” he added. “Sometimes I feel like my teeth are Dr. K’s masterpiece, so I better not break them. And I still catch myself breaking food apart, and then remember I don’t have to do that anymore.
“I’m slowly accepting I now have a gorgeous smile I never thought was possible, and I’m very thankful for everything that’s happened,” he said.
Midway through Jeff’s treatment, Dr. Chochlidakis contacted the National Foundation of Ectodermal Dysplasia, and explained the expertise EIOH specialists can offer. Since then, Eastman Institute has become a treatment center for Ectodermal Dysplasia, which affects one out of every 10,000 people. EIOH is listed as the only provider in New York, outside New York City.
“It’s unfortunate that people with Ectodermal Dysplasia struggle to access quality care,” said Dr. Chochlidakis. “Our goal is to help break down those barriers and give patients back their smiles.”