Advocating for a neglected disease
By Rachel Boutet
Students at the Faculty of Dentistry are advocating for a preventable disease that is affecting young children in impoverished communities.
The disease, noma, occurs when bacteria and microbes quickly destroy facial bones and tissues, leading to severe facial disfigurements and often death – the mortality rate of noma is 90 per cent. The disease typically affects malnourished children under seven years old with poor oral hygiene. While it has had the greatest impact in Africa, it’s found worldwide in regions of poverty.
“People think it’s an acronym – I did too when I first learned about the disease,” says Vivian An (class of 2022), one of the co-presidents of the Faculty’s Noma Action Group (NAG). Noma stems from the Greek work nomein, which means to devour. “It’s such a devastating and preventable disease. The goal of NAG is to raise public awareness and advocate for the World Health Organization to include noma in its list of Neglected Tropical Diseases (NTDs).”
NAG was started in 2020 by Joel Rosenbloom, assistant professor, teaching stream, and a number of students passionate about getting the word out about noma, including An and co-president Jacob Thomas. Rosenbloom has a strong tie to noma, having treated children with the disease in Africa. He also worked with An and Thomas to schedule a screening of the film Restoring Dignity, an expose on noma.
“Dr. Rosenbloom is such a passionate and inspiring professor,” says An. “When he speaks to you about noma, he really allows you to understand how those affected are feeling. It makes you feel inspired to take action.”
And An did exactly that. She used her graphic design skills to help develop promotional materials for noma events at the Faculty, including one in early November 2021 with Fidel Strub, a survivor of the disease. Strub spoke about his lived experience with noma, including how he has gained confidence after going through bullying, anxiety, trauma and countless surgeries.
“It was a great experience for the students who attended,” says An. “We felt humbly inspired by his words and experience. It makes you think, if someone can go through that, there is hope for any patient going through issues, and hope to inspire our community as a whole.”
Avery Donkin-Verschuren (class of 2023) also attended the event as a new member of NAG.
“I think the group has a lot of potential – it’s focused on such an important topic,” she says. “We need to continue to bring more awareness to noma. It’s such a horrific and preventable disease yet it’s hard to find when you search for it on Google. This is something we’re hoping to change.”
"It’s important for all of us to be aware and compassionate about diseases that aren’t prevalent in your community”
Donkin-Verschuren sees a lot of opportunities for collaboration across the university to spread more awareness about noma. She notes the inter-professional education (IPE) group at U of T, which includes members of other faculties at the university who work together on case studies to try to come up with potential solutions.
“I think noma could be a big case study for the IPE group,” says Donkin-Verschuren. “Fidel noted the many people he worked with over the years, including nurses, surgeons and social workers. The education for noma doesn’t have to be limited to just dentistry. It’s important for all of us to be aware and compassionate about diseases that aren’t prevalent in your community.”
NAG will continue to host events at the Faculty, including hosting a speaker who does noma-related surgeries in Africa. NAG’s future goals include hoping to present “One Hour for Noma” to all 10 dental schools in Canada to help spread the word about the disease and inspire people to want to do more about it.
According to Rosenbloom, “If the One Hour for Noma Project is successful, then every single dental student in Canada will graduate with a sound knowledge about noma. Given that noma is not well known among Canadian dentists and that awareness raising is critical, this would be an amazing step forward in the campaign to have this disease eradicated.”
Photo: Sufyanu, a child with noma in Sokoto, Nigeria (credit Inediz, Claire Jeantet and Fabrice Caterini)