Exploring the connection between hemophilia A and low bone density

Those of us with factor VIII deficiency are at greater risk of osteoporosis

by G Shellye Horowitz | January 7, 2025

Me: “Hello?”

Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s concerned.”

Me: “Oh no, that doesn’t sound good. Can you tell me what’s going on?”

Medical assistant: “We just got your baseline bone density tests back and they show you have osteopenia. The doctor wants to make an immediate plan. It’s rare for someone as active and healthy as you are to have this issue, which is why it’s concerning.”

Health challenges from hemophilia A aside, I’m a fairly healthy person. I exercise a lot and am known to be fit and active. As such, my primary care provider was shocked to see my first bone density scan reveal osteopenia, a loss of bone density. Osteopenia is often thought of as a precursor to osteoporosis — more significant bone density loss that carries a greater risk of broken bones.

I immediately apologized to the medical assistant. “Oh my goodness, I’m so sorry to have worried her and your team. I will make sure to send a message online right away. Please know that meeting with me about this would be great, but it’s not an urgent matter and these results are even to be expected.”

How Hemophilia Can Affect Bone Health

Osteopenia and hemophilia A

I hung up the phone and wrote to my doctor.

Me: “Hi there! Just a note to let you know that recent research shows a strong correlation between factor VIII (FVIII) deficiency and low bone density, so my diagnosis of osteopenia is not a surprise. I won’t burden you with tons of articles; causes are not fully understood yet.”

My doctor appreciated the insight, noting that she wasn’t previously aware of the connection. She said her team would keep a close eye on my bone density from here on out.

I felt bad that I had inadvertently panicked my doctor by not sharing this information. Then I paused, wondering if osteopenia had played a role when I fell down a flight of metal stairs and broke my sacrum a few years earlier.

Scientists are learning more about the correlation between low levels of FVIII, a protein needed to help blood clot, and low bone density. People with hemophilia A have lower levels of FVIII in their blood. The role FVIII plays in bone health may not be fully understood, but it’s clear that maintaining proper FVIII levels plays a role in protecting bone density.

I’m so thankful that scientists are studying this connection, as the implications are huge and multifaceted. A better understanding of the impact of factor replacement products on bone health would be amazing. Maybe one day we’ll establish different target levels and recommendations for FVIII treatment to help protect our bones. This research is something we can advocate for as patients.

Being proactive about our bones

It’s critical that those of us with hemophilia know we’re at risk for bone density issues. This allows us to partner with our care providers to ensure we are monitoring our bone health closely.

The Bone Health and Osteoporosis Foundation recommends bone density testing for women 65 and older and men 70 and older. However, earlier testing is recommended for those with risk factors. Many people with hemophilia and some providers don’t realize that the bleeding disorder puts us at a higher risk of developing osteoporosis. People with hemophilia need early testing. Some studies show signs of bone density issues in children with hemophilia!

As patients, we can educate our providers and ensure they know about our screening needs. Knowledge is power! Understanding the risk of bone fractures allows our community to carefully weigh our physical activity choices to be safer.

Research in this area fascinates me. I believe it will ultimately impact hemophilia treatment. Maybe scientists will determine that we need to maintain higher levels of FVIII to protect our bones. How high do FVIII levels need to be in order to prevent osteopenia and osteoporosis? I look forward to learning more from the scientists working hard to find answers to this critical issue.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.

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About the Author

G Shellye Horowitz , MA, PPS, has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. She also has hemophilia A. Her advocacy work includes an emphasis on early diagnosis and care for females with hemophilia and strengthening diagnosis and care for all people with mild bleeding disorders. Shellye is a licensed school counselor and principal with over 30 years experience. She currently works for the University of Washington as a researcher in the Johnsen Lab. She lives in Northern California, where she and her dog, “Hope,” love to wander through the majestic Redwood forests. All opinions are her own.