Bone health isn’t necessarily top of mind — especially at younger ages — but it should be.
People with hemophilia are more than four times as likely than those without the bleeding disorder to develop osteoporosis-related fractures due to low bone mineral density (BMD), according to one study.
The reasons are complex, says Brandon Hardesty, M.D., an adult hematologist at the Indiana Hemophilia and Thrombosis Center in Indianapolis.
“Many hemophilia treaters are not thinking about this issue, except in their elderly individuals,” he says. “The fact that we see lower BMD in pediatrics is one of the more concerning things that we’ve observed. It really makes an argument for doing something earlier.”
Before prophylaxis was available, people with bleeding disorders generally avoided physical activity. As kids, therefore, they missed out on play that is crucial for bone health, says Cindy Bailey, PT, DPT, OCS, SCS, ATC, director of physical and occupational therapy for the Orthopaedic Hemophilia Treatment Center at the Luskin Orthopaedic Institute for Children in Los Angeles.
“Our bones retain calcium when we do weight-bearing exercise, like when you land from a jump,” she says. “Because people with bleeding disorders weren’t as active as children, they didn’t develop as much BMD early on.” Lower BMD leads to osteoporosis, which weakens bones and contributes to fragility fractures. But this isn’t just a concern for older generations.
“Unfortunately, there is still an increased prevalence of low BMD among younger individuals who have been on prophylaxis their entire life,” Hardesty says. He points to deficiencies in factors VIII and IX, proteins that help bone formation.
Here, Bailey and Hardesty share three steps to have healthier bones.
1. Get Active
“We never know when a person may have a bleed that prevents them from being active,” Bailey says. “If we can work on cardiovascular fitness, joint strength, and balance now, that will help a person have a better outcome later on.”
Bailey recommends starting with cardiovascular exercise, such as walking. Then, add in strength and balance exercises. Finally, jump into weight-bearing exercises for the most bone-density benefits. Just don’t forget to wear safety equipment — Bailey says most pediatric fractures happen during play and home activities.
2. Make Lifestyle Changes
A few key lifestyle changes can help you build stronger bones. Prioritize a healthy diet with foods rich in protein, calcium, and vitamin D, such as meat, beans, dairy, leafy greens, tofu, fatty fish, and fortified milk, cereal, and juice. Vitamin D, which you can also get from supplements and sun exposure, helps your body absorb calcium. Additionally, avoid smoking and drinking alcohol excessively, which inhibit bone growth.
3. Seek Early Screenings
Hardesty says to talk to your health care provider about testing your vitamin D levels and bone density so you can correct deficiencies before a fracture occurs. He is helping to write a new guideline on bone health, including regular screenings at earlier ages, for the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council. “My hope is that by recommending testing earlier,” he says, “we can pick up on low BMD earlier.”