We must avoid being complacent with hemophilia treatment

The start of a new year often brings a surge of enthusiasm, hope, and resolutions. We might set ambitious goals like, “This is the year I lose weight.” Or, “This is the year I go to the gym five days a week.” Or, “This is the year I mend a broken relationship.”

While many people set goals, shortly into the new year, some might feel like they’ve failed. Having overly ambitious or unrealistic expectations can lead to frustration and even a sense of failure. This vicious cycle can leave us doubting our self-worth and ability to make meaningful change.

I find myself reflecting on 2024 not only for myself but also for my family. My youngest son, Caeleb, is a freshman in college and has severe hemophilia with an inhibitor. He lives at home and hopes to move into the dorms next fall. I’m grateful to have him at home another year, not just because I want him nearby, but also to keep a close eye on his health and his ongoing treatment.

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Complacency has consequences

Earlier this week, I opened the refrigerator and a dose of Hemlibra (emicizumab-KXWH) fell out. Caeleb keeps this medication in the refrigerator door. I thought that was odd. He usually has only two doses in the fridge at any given time, but when I looked closer, I saw several doses. My heart sank.

I no longer remind Caeleb to take his medication. He’s an adult now, and my husband and I have made it clear that managing his bleeding disorder is his responsibility. For years, we’ve worked to prepare him for the transition into adulthood. Yet, when I asked him why there were so many doses in the refrigerator, he said, “Oh, I keep forgetting.”

Forgetting? Really? Hemophilia with an inhibitor has shaped Caeleb in countless ways. Between repeated joint bleeds, damaged ports, hospitalizations, and chronic pain, I have a difficult time understanding how he can forget.

But Hemlibra has been a game changer for him. With fewer bleeds and no hospitalizations, the problem now is that he’s grown complacent regarding his care. Because he no longer lives with constant bleeding and his life is seemingly free from hemophilia, forgetting to treat is easy. This complacency worries me.

As much as I’d like to admonish him, he’s a young adult who needs to take ownership of his health. Yet, I know that being complacent can have serious consequences when it comes to a bleeding disorder. My husband and I are planning to have a conversation with Caeleb about how he can stay on track with his treatment. Perhaps a reminder of the past will help him understand the importance of taking his medication on schedule.

I hope he sees the importance of prioritizing treatment of his bleeding disorder. If Caeleb resolves to administer Hemlibra regularly, he has a better chance of avoiding a life with constant joint bleeds.

Reflecting on Caeleb’s situation brings to mind the challenges we face when making resolutions. Losing focus is easy, and being complacent often follows. Life’s daily distractions easily divert us from our best intentions. Just as I want to support Caeleb in finding ways to succeed, I also remind myself that we’re not alone on this journey. With the support of our loved ones, we can work toward a healthy and fulfilling new year.

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.