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Physicians need to increase awareness about maintaining a quality of life for children who have to live with bleeding disorders.
Finding a way to incorporate normal, healthy sports and exercise with safety in children with bleeding disorders can be tricky, but it can be done.
Shannon Carpenter, MD, MS, FAAP, professor of Pediatric Hematology/Oncology at the University of Missouri-Kansas City School of Medicine, director of the Kansas City Regional Hemophilia Treatment Center, and director of the anticoagulation management program at Children's Mercy Hospital, Kansas City, Missouri, delivered a presentation titled “Bleeding disorders and physical activity: Current recommendations” on Sunday, November 4, at the American Academy of Pediatrics (AAP) 2018 National Conference and Exhibition in Orlando, Florida, that highlighted some new recommendations for children and teenagers with bleeding disorders and how pediatricians can help guide their activities.
First of all, Carpenter says some physical activity is beneficial for children with hemophilia and other bleeding disorders, but those activities should be chosen carefully to avoid doing more harm than good.
About 400 babies-or 1 in 5000 male births-are born with hemophilia A in the United States each year, according to the Centers for Disease Control and Prevention (CDC), with an estimated total of 20,000 cases nationwide across all ages. Most cases are diagnosed early in childhood, according to the CDC, at as early as 1 month of age in severe cases. Some of these cases-two-thirds-are rooted in family histories, but the rest have no genetic indication and are diagnosed only after an unusual bleeding event. Treatment and management of bleeding disorders such as hemophilia depend on the severity of the disease, much like the recommendations for activity.
"In general, avoid contact sports-sports where you are supposed to hit someone-and those with high risk of head injury, like diving," Carpenter says. "Activity guidelines for other bleeding disorders are extrapolated from knowledge about hemophilia. Some people with milder bleeding disorders may be able to do more vigorous activity. Often, the recommendations are tailored to the individual."
Another consideration is exercise for health promotion in patients with bleeding disorders. Specifically, Carpenter says exercise may help mitigate chronic synovitis and joint bleeding-both common problems that plague individuals with bleeding disorders. Appropriate exercise may help to strengthen muscles, which in turn strengthen joints, she adds.
Carpenter points out that children who are regularly active have been found to have fewer bleeding episodes, decreased joint damage, and improved bone density. Vigorous exercise has even been shown to help increase factor VIII levels transiently in mild and moderate hemophilia A, she says.
Although some general practitioners may not see too many cases of bleeding disorders, Carpenter says she hopes to help increase awareness about maintaining a quality of life for children who have to live with them. Children with bleeding disorders should receive appropriate prophylaxis and an assessment from their physician before beginning exercise or sports, and clinicians should provide children and their families with written directions about what to do in case of a bleed.
"The approach to the patient must be holistic. While we don’t want to forget their bleeding disorder, we also want them to be healthy individuals with good quality of life," Carpenter says. "We want to enable patients with bleeding disorders to participate in physical activity as much as is reasonable to optimize their health and quality of life."