Embracing the routine of managing bleeding disorders

Taking time off is critical for our mental health. Even if a vacation is a staycation, having time to relax and have fun is essential for our overall well-being. Rest and rejuvenation also help make us more productive.

But vacations are a luxury. Traveling to Europe, cruising to Mexico, and driving across the country involve financial cost. These adventures are instead often lived out in the imagination, especially for those pressed on money — or living with hemophilia or another chronic illness.

Many years ago, a hemo mom told me she gave her son a break from infusing during the holiday season. I was stunned. I couldn’t imagine how that two-week break would benefit her son. Regularly infusing my sons, who both have hemophilia A, helped to ward off their bleeds. While fewer needle sticks are nice, what if a bleed begins? Is it responsible to put bleeding disorders aside?

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Infusing and treating hemophilia bleeds are part of my sons’ lives. Before Hemlibra (emicizumab-KXWH), my oldest son, Julian, would infuse three times a week. My youngest son, Caeleb, needed to infuse daily. Their needs were different, but they had the same goal.

During the holiday season, when schedules are different and families are busy, treating a bleeding disorder should continue to be a priority. It’s not the norm for children to face regular needle sticks. What people with a chronic illness must do to maintain their health is beyond most people’s imagination.

Unfortunately, there’s no vacation from taking care of a severe chronic condition. While it’d be nice to take a holiday from infusions, the risk of skipping them is too high. One bleed into a joint causes damage. Why take the chance?

My youngest son, Caeleb, is 17 years old and dealing with the aftermath of many bleeds into his joints. His chronic pain is often debilitating and frequently keeps him from leaving the house. Seeing a young man with a future of possibilities but also unbearable pain is heartbreaking.

Caeleb hasn’t taken a break from infusions for the holidays, which makes a difference. But even with that, he’s lucky that he hasn’t had a bleed. Hardly a holiday season has passed without his having one.

It’s essential to maintain a regular schedule in treating chronic disorders, regardless of the season. Managing a bleeding disorder should be a daily routine. When my sons were little, I told them infusions were as important as brushing their teeth. It needs to be done to take care of their bodies.

Embrace the daily habit of caring for your loved one’s chronic condition, or your own. It may be the key to enjoying the festivities of the holiday season.

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.