Dr. Cibele Nasri-Heir has received calls and emails from people around the globe who suffer from an extremely rare disorder called burning mouth syndrome. An expert who has treated the condition but now focuses on research, Nasri-Heir provides information and understanding.
Burning mouth syndrome causes a chronic, burning pain that has nothing to do with scalding food or drink. It can be associated with a dental procedure but usually occurs for no apparent reason. The cause remains a mystery. Patients who have burning mouth syndrome are often dismissed by practitioners and specialists, who know little about the condition and assume their problem is psychosomatic.
“Many providers think it’s in the mind, but it’s not,’’ said Nasri-Heir, an assistant professor and coordinater of clinical research at RSDM’s Center for Temporomandibular Disorders and Orofacial Pain. “They need to be believed; otherwise, they feel abandoned.”
While medication can help decrease the pain, often it doesn’t disappear completely and patients must learn how to live with it. Nasri-Heir began treating patients with burning mouth syndrome in her homeland of Brazil several years ago.
At RSDM, one of her early research projects demonstrated how diminished function of nerves that carry taste can result in the syndrome. Recently, she found evidence that the pain inhibitory system of these patients may not function well. While the cause and cure are still unknown, her work and compassion are reassuring to patients, she says. “I tell them, ‘there are researchers working on this. Don’t lose hope.’’’