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Maryellen O’Leary, RN, patient care coordinator at the Alta Bates Adult Hemophilia-Hemostasis Program in Berkeley, Calif., is among an estimated 150 to 300 nurses who specialize in treating the nation’s 20,000 hemophiliacs, such as Stanley Horyza, one of an increasing number of hemophilia patients who enjoy a full life, in relatively good health.

When Stanley Horyza had an internal bleeding episode in his kidney recently, his first reaction was to pick up the phone and call his nurse.

Horyza, 28, has hemophilia, but is adept at managing his disease: In high school, he was a member of the varsity swim team; he works full time as an office manager at H&R Block; he’s married with a 4-year-old daughter. But living with a serious blood disorder means things can easily go wrong, and when he has a question, Maryellen O’Leary, RN, is on the other end of the line.

O’Leary is patient care coordinator at the Alta Bates Adult Hemophilia-Hemostasis Program in Berkeley, Calif., and is one of an estimated 150 to 300 nurses who specialize in treating the nation’s 20,000 hemophiliacs. Hemophilia is a rare blood disorder caused by a deficiency in one of the blood clotting factors, resulting in excessive bleeding. Although small wounds and punctures usually are not a problem, uncontrolled internal bleeding can result in pain and swelling, as well as permanent damage to joints and muscles.

O’Leary describes herself as the go-between, a bridge between her clinic’s 170 patients and the lone on-site physician. She spends about half her time working directly with patients, doing assessments and evaluating bleeding episodes, and the other half coordinating treatment with physicians, surgeons and dentists, doling out advice over the phone and facilitating insurance coverage.

Horyza visited O’Leary at the clinic in May for a preop knee replacement surgery consultation. Although the San Jose, Calif., resident is a “severe” hemophiliac—someone who has less than 1 percent clotting factor—he is one of “our success stories,” O’Leary said.

“When you look at [a hemophilia patient’s] joints, even at age 28, there’s a spectrum of damage. He’s got good muscle tone, flexible joints,” O’Leary said.

After Brad Lewis, MD, examined Horyza, O’Leary came in, and the two had a quick discussion about Horyza’s postsurgery rehabilitation. O’Leary advised him to take a high blood-clotting factor dose before any physical therapy on his knee to avoid any bleeding episodes, and warned him that he would have to endure some “pain and aggravation” in order to develop good flexion in the joint.

Horyza said he is eager to move ahead with the surgery and to get rid of the brass-tipped cane he has relied on.

O’Leary’s clinic treats only adults—in California, hemophilia patients younger than 18 are seen in pediatric centers—and most of her patients are not as healthy as Horyza.

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