Boy grinning with missing tooth

Finding a Dentist Who Treats People With Bleeding Disorders

Trouble finding a dentist? Here are some ways to find the right dental home
Author: Elizabeth Thompson Beckley and Melanie Padgett Powers

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During her almost 30 years working with hemophilia treatment centers (HTCs), Karen Ridley, RDH, MS, says one of the most frequent calls she has received is for a recommendation for a dentist to treat someone with a bleeding disorder.

“There are few dentists who specialize in hemophilia,” says Ridley, assistant professor of dental hygiene at the University of Michigan in Ann Arbor. Some HTCs have a specific group of dentists they use, but not all are so fortunate. Much depends on geographic circumstances and the supply of dental professionals in a region.

“If you have to drag patients to the other end of the state, they’re less likely to go,” Ridley continues. She encourages families to use a local dentist they are comfortable with, but offers a note of caution. “Make sure the dentist and treatment center are in contact with each other.”

If you’re having trouble finding a dentist who will see people with a bleeding disorder, first check with your HTC and your local National Hemophilia Foundation chapter for referrals. Seeking word-of-mouth recommendations from other families with bleeding disorders is another way to identify dentists who will understand your needs. Look for hospital-based dental clinics in your area. A few dentists who treat people with bleeding disorders can be found through the Centers for Disease Control and Prevention’s HTC directory. In the “job description” option, search for “dentist.”

“Any dentist can and should see hemophilia patients,” says Richard Burke, DMD, director of the division of pediatric dentistry at the University of Iowa Hospitals and Clinics in Iowa City. “The only thing required is appropriate consultation with the physician and a desire to help.”

Unfortunately, not all dentists see it that way. After Candi Nakatani had trouble finding a dentist to agree to see her son, Caleb, she became more proactive. Caleb, 13, has severe hemophilia A. When Caleb was about 4 years old, Candi was refused over the phone by the dental staff at three different dentists’ offices. She then decided to try to have the dentist meet Caleb first so she could explain his hemophilia treatment.

When Candi called the fourth dentist’s office, she said, ‘I’d just like to meet the dentist. I have three kids, and I want to make sure he is a fit for my children.’” This time she took along Caleb and her two unaffected children.

At the appointment, the dentist looked in her children’s mouths, but didn’t do any cleaning. “After he had already seen them and could see that all three of them were healthy, average kids, then I let him know that my oldest had hemophilia.”

Candi explained that her son had a Port-A-Cath® and was on hemophilia prophylaxis treatment. “I was trying to get across to him how important dental care was, especially with hemophilia,” she says. Candi told the dentist he did not need to be an expert in hemophilia, emphasizing that she would be in charge of coordinating Caleb’s care and that the dentist would be a partner, along with the HTC. The dentist agreed that he was comfortable with that and asked for the HTC to put together a plan to manage her son’s hemophilia as it related to his dental care.

After the family moved from California to Washington state a few years ago, Candi had to find a new dentist. This time, Caleb’s new orthodontist referred her to a dentist.

While it may take a unique approach and more persistence to find the right dentist, Melissa A. Kennell, DDS, a general dentist in Gilford, New Hampshire, cautions that you don’t want to persuade a medical professional to see your child. Kennell’s son has severe hemophilia A. “It means the dentist is not confident in treating someone with a bleeding disorder. You wouldn’t want him to treat your child.”

You can download an information form similar to what Candi used, specifically for people with bleeding disorders to take to your dentist. “Information for the Dentist” was developed by Kennell.