In February, I wrote about hemophilia’s effects on bone health after attending a webinar sponsored by Factor My Way, a patient support program. It featured bleeding disorders expert Claudio Sandoval, MD, who explained that everyone with hemophilia A (factor VIII deficiency) is at an increased risk of low bone density.

I have hemophilia B (low factor IX) and von Willebrand disease (VWD). Sandoval didn’t know if this would cause bone issues for me; nonetheless, the presentation prompted me to request a dual-energy X-ray absorptiometry (DEXA) scan to check my bone mineral density. My primary care doctor agreed to order the test in February at my annual visit, and I finally had it done last week.

Low bone density

Studies have shown that blood clotting factor VIII is essential to developing healthy bones. The lack of functioning factor VIII changes how bone mineralizes, but researchers are unsure why. Because people with hemophilia A, as well as many carriers, are deficient in factor VIII, this can lead to bone problems.

Low bone density can result in osteopenia and progress to osteoporosis, which is when the bones become weak and brittle, putting you at an increased risk of fractures. People with bleeding disorders may struggle to heal from these injuries.

While learning about these issues, I remembered how I broke my foot a few years ago, and the healing process took months longer than expected. My foot is still an issue for me today.

According to one study that Sandoval quoted during the webinar, out of 10 people with hemophilia A, four will have osteopenia, and three will have osteoporosis. He suggested everyone with hemophilia A, including adolescents and female carriers, have a DEXA scan to check for osteopenia and osteoporosis.

My DEXA scan

A DEXA scan is the first step to determining if you have low bone mineral density. The Cleveland Clinic website notes that, “A DEXA scan is a type of medical imaging test. It uses very low levels of x-rays to measure how dense your bones are.”

My recent scan took no longer than 10 minutes. I lay on an X-ray table on my back for the test, fully clothed. Once the technician positioned me correctly, all I had to do was be still. A large scanning arm passed over my body. The technician explained that the test measured bone density by taking measurements from my hip, neck, and back.

The results came back the next day. It turns out I have osteopenia. The good news is I don’t have osteoporosis yet, and I may hopefully avoid it with a few changes. My doctor said I’ll need regular bone density tests to monitor my bone health, probably every two to three years.

I’m not sure how I feel about this new information. After listening to Sandoval, I’m not surprised by it. And besides low factor VIII, a result of VWD, I have other risk factors, namely being a post-menopausal woman over 50. My doctor suggested eating more calcium-rich foods and taking a calcium supplement. I eat a mostly plant-based diet, which means more soy, beans, and dark, leafy vegetables.

The correlation between low factor VIII and low bone density is important. If you live with a bleeding disorder, I suggest discussing a DEXA scan with your healthcare provider.