Rush University Medical Center Promotes Hemophilia Awareness Month In March

Main Category: Blood / Hematology
Article Date: 10 Mar 2009 - 0:00 PDT


Arno Curtis is as active as any 11-year-old, playing baseball, basketball, lifting weights and being a member of the drama club, but these activities are impressive considering he has hemophilia, a rare genetic bleeding disorder. Fortunately, Arno was diagnosed and began receiving treatment for the disease as an infant, but 90 to 95 percent of those with hemophilia worldwide are undiagnosed and do not receive treatment, which could lead serious medical complications or death.

Hemophiliacs have a deficiency of certain blood clotting factors that are needed to stop bleeding after a cut or injury and to prevent spontaneous bleeding. According to Dr. Leonard A. Valentino, professor of pediatrics and director of the Hemophilia and Thrombophilia Center at Rush University Medical Center, treatment for hemophilia involves regularly scheduled infusions of clotting factors, called prophylaxis, to prevent bleeding before it starts and to avoid joint damage.

"Prophylaxis lessens the likelihood of uncontrollable bleeding, especially in the joints which can cause arthritis, and increases the likelihood of hemophiliacs having the ability to live active lifestyles," said Valentino. "Most patients who are completely compliant with the infusions have zero bleeding."

But 90 to 95 percent of the 650,000 hemophiliacs worldwide do not know that they have the disease, which leads to the development of serious bleeding problems and joint arthritis. "By the time an untreated hemophiliac is 10 or 12 years old, he could be severely crippled," said Valentino.

Curtis began prophylaxis treatment at age 13 months using a port, which is an implanted device under the skin that is connected to a vein and infuses the clotting factors into the bloodstream. In the summer of 2008, Arno's physicians at Rush removed his port, and he began injecting the treatment into his peripheral veins using a needle every other day as his new form of treatment.

Miriam Curtis, Arno's mother, said the prophylaxis allowed Arno to participate in activities that would normally be off-limits to a hemophiliac: "He doesn't have many restrictions than what his peers have. He's equal with his peers in school and he's a pretty active kid."

Rush is one of 134 federally funded hemophilia centers in the U.S. and offers a multidisciplinary clinic for hemophiliacs where they are seen by multiple specialists, including infectious disease specialists, physical therapists, nutritionists, psychologists, patient advocates and orthopedics.

"The Center for Disease Control has done research that shows if you attend a comprehensive clinic you are two-thirds less likely to die from hemophilia. Our job is to minimize their complications and maximize their productivity," Valentino said.

Miriam said Arno's prophylaxis regiment is easier today than it was in the past: "The treatment takes seven minutes, from mixing the injection to clean-up. So, it's not a huge disruption, just part of our routine."

Aside from his many hobbies and sports activities, Arno has a new motivation for learning how to personally conduct the treatment: a field trip.

"I want to do it because I'm in fifth grade and we are planning a trip to go to Washington D.C. in June for a few days and my parents can't go. If I learn how to do it by myself, then I can go there," he said.

Arno is a severe hemophiliac whose body provides clotting less than one percent of that of a normal person, so his physical activity is a miracle according to his father, Dennis Curtis.

About National Hemophilia Foundation (NHF)

NHF seeks to promote and enhance the quality of life for all people with coagulation disorders through education, advocacy and research. Towards these ends, NHF engages in a number of program initiatives along with its 48 chapters nationwide. NHF supports important clinical research, funds educational outreach, issues medical advisories, convenes educational meetings and symposia, advocates for improved treatments, makes policy recommendations, and promotes communication and cooperation among all members of the community.

About Rush Hemophilia and Thrombophilia Center

The Hemophilia and Thrombophilia Center (HTC) at Rush is the largest hemophilia and thrombophilia program in Illinois, offering a full menu of clinical and laboratory services onsite for patients with bleeding and clotting disorders. Our federally funded program collaborates with the Department of Health and Human Services (HHS), Great Lakes Hemophilia Foundation, the National Hemophilia Foundation and the Centers for Disease Control and Prevention (CDC) to provide state-of-the-art, family-focused, culturally sensitive medical, psychological and social services.

Rush University Medical Center

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