Celebrating small wins as I learn my osteopenia hasn’t progressed

I receive an email saying the test results from my second bone density scan are in. Shaking and holding my breath, I click on the link and sign into my patient chart. I am exhausted. As I continue to wait for insurance to approve a trial of my fourth factor replacement medication for hemophilia, my plate is full, even overflowing. I can’t add anything else.

I download my bone density report on the computer. As I open it, it’s clear I still have osteopenia, or lower-than-normal bone density. That makes sense, as decreased bone density is common in people like me with hemophilia A, or factor VIII (FVIII) deficiency. I search my online records to find my report from two years ago, when I was diagnosed, wanting to see how much the numbers have changed.

Comparing the two reports side by side, I start to cry in relief. Finally, I have a win!

The bone density in my lumbar spine hasn’t changed. The bone loss is there, but it didn’t get worse. And the bone density in my left hip improved, with my T-score rising from -1.3 to -0.9! (The lower the T-score, the lower the bone density.) I still have osteopenia in some parts of my body, but I seem to have stopped its progression — at least for now.

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Changes that helped

I believe two things helped me stop the osteopenia from progressing.

The first was understanding that my FVIII replacement therapy wasn’t working correctly and changing my treatment regimen accordingly. Almost a year and a half ago, my doctor increased the frequency of my infusions from every 72 hours to every 48 hours. That was because my body was clearing the replacement FVIII too quickly, and I was getting too many breakthrough bleeds. Increasing the dosing frequency keeps my factor levels high enough to prevent some of those breakthrough bleeds. I believe that the higher levels of FVIII in my system have been protective for me and helped minimize bone loss.

The second thing that helped was my increased ability to do more weight-bearing exercise. As my bleeds decreased, I was able to become more physically active. I’m back to exercising eight to 10 hours a week, which has almost certainly played a role in stabilizing, and even increasing, my bone density.

I am so happy. I needed this news.

Small wins are still wins

Living with a chronic illness means there are many times when I’m waiting for the next challenge to emerge. Too often I find myself holding my breath, knowing that the status quo isn’t as stable for me as it is for others. One small accident can result in a bleed that lasts for days. Circumstances no one seems to understand can suddenly cause my immune system to clear the FVIII products faster, requiring a new plan to protect me from bleeding.

But not today. Today, I get to take a deep breath. My bone density is currently OK. I’ll continue to follow my FVIII replacement plan and hope for more good news as I continue to increase my weight-bearing activity.

It’s so important to celebrate the small wins. Even with a bleeding disorder, we can still make positive progress — and it means so much when we do. I’m tucking this memory aside so I can pull it out the next time I’m overwhelmed by the realities of life with hemophilia. I’ll continue to struggle, but more wins will also surface.

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.