Osteoporosis, a disease of low bone mass and strength, is a common concern in aging individuals. People with hemophilia have a higher risk of the disease, compared with other groups. (Other bleeding disorders, while less studied, also seem to affect bone health.)
The reason is not entirely understood. Likely, there are multiple factors at play at different times, according to Christine L. Kempton, MD, MSc, professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine and director of the Hemophilia of Georgia Center for Bleeding & Clotting Disorders of Emory.
“In male mice, factor VIII deficiency alone leads to abnormal bone formation,” Kempton explains. “At later ages, joint bleeding contributes to increased bone resorption, or breakdown. Defects in bone metabolism have also been seen in hemophilia B mice.”
Possible Causes
In people with hemophilia, the risk factors strongly associated with osteoporosis include:
- Advanced joint disease
- HIV
- Low body mass index
- Tobacco use
As for how factor VIII or factor IX deficiency impacts bone, much of the existing research is conflicting. Studies are ongoing.
One factor commonly thought to cause osteoporosis is lack of physical activity. According to Kempton, many people assume that people with hemophilia develop osteoporosis because they aren’t as physically active as others.
“One can’t say that it doesn’t play any role, but it’s not as big a contributor as many think,” she says. “Being active is good, but [being inactive is] not why people get osteoporosis.”
How Osteoporosis Is Managed
Kempton’s HTC performs routine screening in patients over age 50. Osteoporosis by itself doesn’t cause pain or disability, but it can lead to dangerous fractures from relatively minor trauma or falls. That’s why screening is key—to identify osteoporosis early and begin treatment that can lessen fracture risk.
If a bone mineral density test indicates a patient has osteoporosis, Kempton will coordinate treatment with an endocrinologist. Commonly, treatment includes medications that prevent bone breakdown or encourage bone formation. She also recommends assessments of vitamin D, calcium, testosterone and parathyroid hormone levels—and replacement with supplements if necessary.
Staying Active with Osteoporosis
Physical activity is good for everyone, and people with osteoporosis are no exception. Experts recommend 150 minutes of moderate physical activity per week. However, joint disease can make it difficult to find exercises that aren’t painful.
To lessen the risk of falls (and bone fractures), Kempton suggests focusing on activities that improve balance, strength and flexibility.
Yes:
- Stretching
- Walking
- Swimming
- Dancing
- Stair climbing
- Weightlifting (free weights, weight machines or floor exercises using your body weight)
- Gardening
- Tai chi
- Standing on one leg
No:
- High-impact exercises (jumping, running, jogging)
- Activities that involve bending or twisting, which is how most fractures occur (situps, golf, tennis, bowling, some yoga and Pilates poses)
Learn More: Visit NHF’s website to download the Playing It Safe: Bleeding Disorders, Sports and Exercise booklet: hemophilia.org/community-resources/request-information/read-our-publications. For more information on osteoporosis, visit the Bone Health & Osteoporosis Foundation at bonehealthandosteoporosis.org.