Real Patients, Real Stories: Mother and Daughter with Dentinogenesis Imperfecta Share Their Experiences as Part of GSDM Rare Patient Seminar Series

Criss and Ann Quigley, a mother and daughter with the rare dental disease dentinogenesis imperfecta, speak at the latest rare patients symposium. This seminar series was created by Clinical Associate Professor Dr. Yoshiyuki Mochida to humanize rare oral-related diseases and give dental students the opportunity to interact with real patients. (Photo credit: Dan Bomba, GSDM.)

In 2017, as part of the school's first rare dental disease symposium, mother and daughter Criss and Ann Quigley, both of whom have the rare dental disease dentinogenesis imperfecta, GSDM students were told about their experiences with the disease. This April, six years after first attending GSDM, Criss and Ann return to inspire the next generation of dentists and drive legislative change.

This seminar series was created by Clinical Associate Professor Dr. Yoshiyuki Mochida to humanize rare oral-related diseases and give dental students the opportunity to interact with real patients. Mochida said he initially started the series because he wanted to ensure that GSDM students were equipped to work with any dental patient.

“There are medically underrepresented populations among Massachusetts residents who suffer from these conditions,” Mochida said. “In a dentist's lifetime, they may or may not see them. But once we do, we shouldn't say “we don't know” because we learn about them in textbooks, but that's just a small topic. A few words or a paragraph in a textbook won't make a young dentist remember it, but if they meet real patients and listen to their thoughts, it will stick in their minds more deeply.

Dentinogenesis imperfecta (DI) is a genetic disorder that affects tooth development. DI causes teeth to be discolored (most commonly blue-gray or yellowish-brown), translucent, and weaker than normal teeth, making them susceptible to rapid wear and tear. Approximately one in 8,000 people suffer from some degree of diabetes insipidus.

Criss and Ann shared their first-hand experiences with DI. In addition to the physical and cosmetic damage to the teeth, DI can cause nutritional and psychological problems. Kris publicly expressed her concerns about giving birth to a biological child and potentially passing DI to her children. Ann was devastated when she started having dental problems and was eventually diagnosed with the same genetic disorder.

“I'm so happy to have her, but I have to say, I often feel guilty and ashamed about giving up DI,” Chris said. “Because seeing what she went through as a child was so much harder than what I went through, and just feeling guilty about the financial burden that could be on her and her future care.”

The two discussed Ann's experiences with dental trauma as a child, which included suffering frequent abscesses, requiring a Pappus plate, and being suffocated by a crown.

“It can also be difficult to find a practitioner who is qualified and willing to take on your case,” An said. “Because your condition is so rare, it's difficult to find reliable information to try to make a decision about all of these very expensive treatment plan options that you have.”

Photo credit: Dan Bomba, GSDM.

Although there are many treatment options, no one treatment plan is suitable for all cases of DI. Different treatments include braces, gum surgery, bone grafting, tooth extractions, dental implants, crowns and bridges. DI patients need to be prepared that their original treatments will not be permanent due to ongoing crown fractures and root weakness/infection/loss from periodontal disease. It is possible to perform one or more additional full-mouth reconstructions.

Today, the Quigleys are still trying to figure out the best way to care for DI. Throughout her 20s, Ann encountered a “constant stream” of questions or problems every month – all of which led to more work. Half of her previous restoration work was damaged or missing. She was told she needed a new full-mouth reconstruction but put off treatment because she didn't have insurance, which would have cost an estimated $50,000 to $100,000. In Massachusetts, cleft lip and palate are the only craniofacial conditions with mandatory coverage. Insurance companies tell people with DI that their treatments are cosmetic, not medically necessary, and therefore not covered. Medical insurance doesn't cover it, and dental insurance only pays a small portion of the cost, if any.

Eventually, Ann couldn't wait any longer and decided to begin the long and expensive process, although she still wasn't sure how she would pay for it. The first step is to perform a “temporary restoration” after removing the old crown and bridge. One of the abscessed teeth has now been extracted, so the next steps are more oral surgery and extractions before starting the implant. Eventually, she will have new crowns and bridge work.

“We just kept waiting and waiting and hoping, but eventually I was told that if I continued to wait, it would negatively affect my results,” An said. “I was just struggling with everything going wrong and having trouble eating, so we decided we needed to move on and just try to figure out the money part.”

Mochida and the Quigleys are working together to change Massachusetts law so that DI and other rare genetic diseases can be properly covered by insurance. An Act Relating to Ensuring Treatment of Inherited Craniofacial Disorders is legislation that requires insurance plans to cover treatment of congenital craniofacial conditions that affect basic abilities such as chewing food and speaking. Mochida, GSDM Dean Cataldo Leone and GSDM Pediatric Dentistry Chair Dr. Keri Discepolo, along with many other Massachusetts dental professionals, wrote letters of support for the bill.

It's not that they're lazy, don't brush their teeth well, or don't floss, it's not like that,” Mochida said. “It's caused by mutations in the blood and genes. Medicare usually pays for hereditary diseases, but these diseases are very rare and only affect the craniofacial tissue and only the teeth. So the health insurance companies said no because they thought it was It is a cosmetic or other treatment and is not medically necessary.

Chris and Ann don't talk lightly about their experiences with dentinogenesis imperfecta, but they both stress how valuable it is to provide dental students with candid, honest stories to not only help improve treatment, but also expand dentine development Number of Insufficiency Advocates.

“We're excited to be asked to tell our story to help future dentists, who may not have many rare disease patients, understand what those experiences are like and maybe even what they might expect when working with someone,” Chris said.

Ann hopes their stories will inspire GSDM students to become passionate about rare disease care.

“When you suddenly talk about something traumatic or stressful that happened, sometimes you feel emotional and that can trigger some emotions,” An said. “But I almost think that’s okay, that’s part of what helps because if we can try to get ourselves to do that, because I think that also helps students understand what it’s really like.”

Mochida urges dental students to try to understand what patients with rare diseases feel like and how to better help them get better care. He hopes the rare patient seminars are one step in their education process.

“At the end of the day, you become a dentist and do something, and then you really have to know why you're doing that or that for your patients, and you should be able to do that no matter who comes to your clinic,” Mochida said.

go through Rachel Grace Phillipson

Real patients, real stories: Mother and daughter with dentinogenesis imperfecta share their experiences in GSDM Rare Patients Symposium Series


11 months ago

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