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Foundation offers advice for dentists treating patients with rare blood disease

February 06, 2012

By Jean Williams, ADA News Staff

Eugene, Ore.—Someday a dental patient may walk into your practice with needs unlike any other you’ve ever treated—perhaps one with the rare genetic blood disease Fanconi anemia. Knowing precisely what to do could save that patient’s life, says a Eugene, Ore., foundation dedicated to fighting FA.

Ms. Mayhew
“It’s an inherited bone marrow failure disease with a very high incidence of cancer,” said Bev Mayhew, executive director of the Fanconi Anemia Research Fund Inc. “So cancer surveillance is key, and oral cancer is one of the top concerns.”

Because dentists may be an FA patient's best defense by finding early signs of oral cancer, the foundation developed and is distributing a fact sheet on FA and oral cancer risk—encouraging FA patients to carry it with them to every dental appointment.

Called “Head and Neck Cancer and Patients with Fanconi Anemia,” the primer is an overview of the disease explaining, among other things, that routine surveillance for head and neck cancer should begin between ages 10-12 years and be performed at least semiannually. FA patients respond poorly to radiation and chemotherapy, heightening the need for early detection.

Fanconi anemia is one of the world's “orphan diseases,” so called because its prevalence falls below the threshold at which the world and—perhaps most notably—pharmaceutical companies are aware of it and thus rally to fight it. “Researchers estimate that there are about 1 in 131,000 births in the U.S. annually. It’s very rare,” Ms. Mayhew said.

Because it’s such a rare condition, the foundation worries that dentists may not be aware of the important role they play in the lives of FA patients.

“Most dentists in their entire lifetime of practice would likely not see a patient with Fanconi anemia,” Ms. Mayhew said. “However, Fanconi anemia patients are being diagnosed with greater frequency. As we understand more about the disease, and educate more health care providers about it, more people are diagnosed.

Dental researchers are increasingly attending the foundation’s scientific meetings, Ms. Mayhew said, including an invitation-only event on squamous cell carcinomas in FA patients this March in Chicago.

One research project led by Dr. Flavia Teles, a dental researcher at Harvard School of Dental Medicine, is examining microbial markers of oral carcinogenesis in Fanconi anemia patients and in general cancer patients. Her research, which will be presented at the American Association for Dental Research annual meeting in March, could lead to the isolation of bacteria that may play a part in the development of oral cancer in both FA patients and non-FA cancer patients.

For more information on Fanconi anemia, visit the Fanconi Anemia Research Fund at

Dentists can download “Head and Neck Cancer and Patients with Fanconi Anemia” at

Access other oral cancer resources at Oral Cancer.

Additionally, search the National Institute of Dental and Craniofacial Research site at for resources on oral cancer.