Imagine one of your knees feeling like gelatin, wobbly and unstable, when you walk, or being hit hard in the arm and feeling your elbow begin to bleed internally. These are only two examples of what can happen to someone who has hemophilia.

In Iowa, approximately 200 people have been diagnosed with hemophilia. Hemophilia is a hereditary bleeding disorder that occurs when one of the blood's factors is missing, says Dr. C. Thomas Kisker, professor of pediatrics in the University of Iowa College of Medicine and principal investigator for the Great Plains Hemophilia Treatment Center (GPHTC) headquartered at UI Hospitals and Clinics. A priority of the treatment center is to educate patients, families, local health-care professionals, school personnel, and communities about hemophilia. Dispelling misconceptions is very important.

"If you touch people with hemophilia, they will not turn into a pool of blood," Kisker says. The only imitations on these individuals is that they cannot participate in heavy contact sports, such as football or boxing. Kisker notes that one of his patients is a varsity basketball player who takes preventive treatments before playing and another is a goalie on an ice hockey team.

"People with hemophilia do not bleed faster than normal, it just takes them longer to stop bleeding," Kisker notes. To stop bleeding, a person with hemophilia must inject a dose of their missing clotting factor. Ideally, this treatment should be done within minutes after the bleeding begins. While external bleeding is easily noticed, most bleeding in people with hemophilia occurs internally in joints and muscles. Symptoms such as swelling, pain, and stiffness may go unrecognized for hours.

"It is vital that people with hemophilia know when they are bleeding, which becomes easier with age and experience," Kisker says. People with severe hemophilia have between three and six bleeding episodes each month, while those with moderate hemophilia may need two to four treatments annually. Those with mild hemophilia are generally treated once every several years.

If parents are unaware they carry the defective hemophilia gene, the disorder may go undetected in an affected child for months after birth. Males are at greater risk for hemophilia while women are rarely afflicted with the disorder. In the United States, an estimated one in every 5,000 males has hemophilia. Because scientists have identified the hemophilia gene, therapies using replacement genes are being studied.

"Genetic engineering is the hope of the future," Kisker says. "Studies are underway using gene transplant to generate what is missing."