Hemophilia bleeding didn’t stop my husband from parenting, working

Jared is the embodiment of resilience and adaptability

Alliah Czarielle avatar

by Alliah Czarielle |

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This past week has been a whirlwind of activity for our family. My husband, Jared, who has severe hemophilia B, experienced a knee bleed that required careful management. But that didn’t stop him from fulfilling his responsibilities around the house and making progress with his budding bottled food business.

The week served as a reminder of the resilience and adaptability required to live with hemophilia, and how we continue to push forward despite the challenges.

When Jared’s knee started to bleed, we immediately knew what needed to be done. Over the years, we’ve become adept at handling these situations swiftly and effectively. Jared administered his factor IX concentrate and took the necessary steps to minimize the bleed’s impact. As such, it was important for him to implement the RICE protocol of rest, ice, compression, and elevation, which meant being on bed rest for a few days.

Managing bleeds has become second nature to us, but it’s still a challenging process. There’s always a mix of concern and frustration, as we know that even simple activities can trigger a bleed. And even the most ordinary of bleeds can cause long periods of debilitation. However, our experience has taught us to stay calm and focused to ensure that Jared gets necessary treatment before anything else.

Admittedly, his most recent infusion was less than ideal. Three attempts to insert the needle into his favorite veins failed, leaving him with a sore, swollen hand. Fortunately, we’ve learned to handle these setbacks with calm amusement and grace. After one more try into a less frequently used vein, we finally saw the backflow of blood needed to administer the life-restoring medicine.

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Keeping up with daily responsibilities

As I mentioned, Jared didn’t let his knee bleed slow him down. He continued to tackle various household chores, proving once again that life doesn’t stop for hemophilia. From fixing things around the house to preparing food and caring for our 5-year-old daughter, Jared proved that he could still be a dedicated dad, even while humorously rolling around in a computer chair while he worked and played.

Living with hemophilia means constantly balancing health management with everyday life. It’s a delicate dance — or in his case, roll — of prioritizing well-being while still getting things done. After all, we have a child to feed, and household upkeep never ends.

On a roll with a new business

One of the most exciting parts of the week was seeing Jared on a roll with his new food business. Food has always been one of his passions, and turning it into a business has long been an aspiration. It’s a step toward a dream come true for him.

He’s been slowly growing a loyal customer base for his homemade bottled goods, which is no small feat, especially for someone who’s occasionally confined to a wheelchair or a bed. Despite the setback of the knee bleed, Jared continued to develop his idea while scooting around the kitchen on a computer chair to rest his injured knee.

Starting a new venture is never easy, and managing a chronic condition like hemophilia adds another layer of complexity. Jared’s dedication to both his business and our family, even while facing health challenges, shows his ability to adapt and make the best of his situation. It’s a reminder that with passion and dedication, we can achieve our dreams, no matter the obstacles.

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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