The right to smile: Sinai Health’s Dentistry Program is caring for patients when no one else can

“It’s like my body doesn’t produce enough of the glue that holds the layers of my skin together,” Novelette explains. The wounds she endures can be as severe as third-degree burns. Scar tissue has caused her fingers to fuse into fists, and swallowing food can create blisters that dangerously narrow her esophagus.

“Some wounds are superficial, others are deeper. I have to wear bandages to heal, to protect myself and to manage infections,” she shares. Her daily routine is filled with constant pain and hours of medical care—her bandage routine alone can take up to four hours. Despite this, she faces each day with remarkable resilience, finding purpose in her work as a hospice volunteer and peer bereavement facilitator.

Novelette credits her ability to live a fulfilling life to receiving the right care.

Sinai Health: Delivering unmatched dental care for the most complex needs

Getting even basic dental care can be an immense challenge for people living with EB. Many are turned away from providers who are unwilling or unequipped to handle the complexities of their care. 

"I have known many friends with EB who lost their teeth in their twenties because they couldn't find adequate dental care," shares Novelette.

Amid countless closed doors, there is Mount Sinai Hospital.

Sinai Health's Department of Dentistry has stood as the only centre of its kind in Ontario for nearly 50 years, caring for adult patients with the most complex and high-risk medical conditions, disabilities, trauma and severe oral disease.

Through its Special Needs Dentistry Program, Novelette found not just a dental team but a lifeline.

“Dr. Mary-Ellen Cascone is willing to do whatever it takes to ensure I’m comfortable,” says Novelette. “She’s attentive, kind and goes out of her way to educate everyone around her about my condition.”

From applying Vaseline to every instrument to carefully positioning Novelette to reduce friction and discomfort, Dr. Cascone and her team go above and beyond to safeguard her oral health. Especially for people with EB, where even the smallest procedure can pose a risk, this specialized care is essential to preventing early tooth loss and preserving overall well-being.

For Novelette, this kind of care is not just rare—it’s life-changing.

Dr. Cascone, who leads the Special Needs Dentistry Program, is quick to praise Novelette’s unbreakable spirit. 

“She is one of the most medically complex people I know, but she lives her life with gratitude.”

Novelette’s life of service

Novelette's philosophy of resilience was shaped at the age of 12, when she attended a camp for children with EB. It was the first time she had ever spent a long length of time with others who shared her condition. 

“I was able to spend a week with people who walked and moved like me. It was like seeing my reflection in the world,” she recalls. It was there that she became inspired by people with EB that drove, attended university and lived independently. 

In adulthood, Novelette has lost many cherished friends—her “camp family”—to the devastating complications of EB, including aggressive mucocutaneous squamous cell carcinomas. These fast-growing skin cancers are a leading cause of death for those living with the condition.¹ 

Despite the physical challenges of living with EB, she has found deep purpose and joy as a hospice volunteer and peer bereavement support facilitator. 

“Volunteering gives me a reason to get up in the morning,” she says. “Even though I know I’m helping, it helps me a lot more.” Her dedication to supporting others has earned her an Ontario Volunteer Service Award.

Through her work, Novelette shares the lessons she’s learned from grief, offering others support and guidance as they navigate their own losses with mindfulness and compassion.

The power of patient-centered care

Stories like Novelette’s highlight the importance of patient-centred care. For adults in Ontario with complex conditions, Sinai Health’s Special Needs Dentistry Program is often their only option for quality dental care—a place where their dignity and health are protected.

"The best way to help patients like Novelette is to take the time to listen, learn and adapt,” says Dr. Cascone. “Every person deserves care that meets their unique needs.”

How you can help

As the program faces growing demand, Sinai Health remains committed to expanding its capacity to help more patients like Novelette, including the establishment of a Special Needs Dentistry Fellowship to train the next generation of dentists.

With increasing waitlists, sustainable funding is critical to advancing our care, research and training efforts to meet this growing need. Join us in our mission to ensure all patients receive the dental care they deserve. Please click here to donate. 

¹ Robertson, S. J., Orrin, E., Lakhan, M. K., O'Sullivan, G., Felton, J., Robson, A., Greenblatt, D. T., Bernardis, C., McGrath, J. A., Martinez, A. E., & Mellerio, J. E. (2021). Cutaneous squamous cell carcinoma in epidermolysis bullosa: A 28-year retrospective study. Acta Dermato-Venereologica, 101, adv00523. https://doi.org/10.2340/actadermatol.adv00523